Town fulfilling ailing girl’s wish list

Chloe is a beautiful little girl! She has needs that most 3 year old girls wouldn't or couldn't dream of! But no matter what happens to her she never complains! The people who have helped this little girl are truly angels!! Melissa and Chloe will be forever grateful!

I think it's terrible that this little girl is battling this condition, but some of the needs on her and her mother's wish list seem a bit extreme. A new or newer couch or chair, new television, DVD player and a new house?!?! The story says that they're looking for items to make Chole's life more comfortable but are any of these requests necessary for her treatment?

I am Chloe's aunt I just want you all to know my sister is a single mom the works so hard to give her child everything she needs. The reason we asked for things like a dvd player and a new home is because Chloe takes long trip from here to Boston to see doctors and she would like to have one and as for a home you all watch the show home makeover... well Chloe needs a home that she can call her own and a place that is safe a clean for her. All of you that have nothing nice to say should put yourself in my family's shoes. My niece is no different from any other child that needs help. We don'[t know what tomorrow will hold for her and i hope all of you that have had mean things to say at least went and educated yourselves on what she has and mabe just maybe you will understand thats chloe needs so much and there are people out there that will help her. So please just remember she is only 3 and you people are really rude for the things you have to say. A dvd player for a child who cannot go outside from the hours of 10-5 doesn't seem to be too much to ask for. Its little things like being able to send your child outside to play to get them out of your hair that you have the opportunity to take advantage of! My sister Melissa couldn't even send Chloe outside by herself for 2 minutes without the fear of her getting hurt!!!!

p.s. if you would like to meet her so you can see her and want us to talk to you about her call me

207-746-5078

CHLOE YOU ARE MY BUTTERFLY PRINCESS I LOVE YOU SO MUCH AND I AM SORRY THAT THERE ARE MEAN PEOPLE IN THIS WORLD.

Nanie Danielle

After reading this article, my sadness quickly changed to shock and then disgust at the comments posted by people. Are the posters that unreasonable that they could not imagine the benefits that a new couch, house, and entertainment equipment would provide this innocent child? I have a 6 y/o and a 3 y/o that god has blessed with good health and it is easy for me to see how lucky i am. My heart goes out to Chloe and with tears in my eyes will kiss and hug my girls a few extra times tonight.

So bethany and scollins342, I hope that after posting those comments you will reflect back on your earlier thoughts and realize the family would trade every possesion they have for a cure. So if you have kids, and I hope you do, when you tuck them into bed tonight, you can consider yourself lucky that your child is not afflicted with this disease.

God bless you Melissa and Chloe Creehan.

-Matt Campbell

Carmel

not actually from Rebecca but Emmy Williams of Medway,

To all who feel Melissa and Chloe's wishes are UNREALISTIC........have you thought that maybe Melissa's idea of a NEW house is not actually a BRAND NEW HOUSE but maybe a Home, a place bigger than a one bedroom apartment with maybe a playroom for chloe to have the luxurys of being able to play inside free from the weathers of maine because she is a child that cannot be out in the snow to play for long periods of time, or in the summer heat, or the many bugs that attack here, she cannot wear bug spray or sunscreen to protect her from these things... her skin is so fragile any of these things will HURT her......we are fortunate to have healthy kids, that can go outside run and play and not worry if they fall down and get a boo boo on the tar or whatever...Chloe deserves to have a place she can be comfortable, and be a kid as much as she can be, our kids fall and get boo boo's we kiss it make it better with a band aid..Chloe falls and gets a boo boo she WILL get an infection that is very threatning...plenty of kisses but no bandaids on this childs skin...there's so much more that i could say but im going to leave it at this....as you go to sleep tonight and give your child butterfly kisses at their bedtime prayers say one for Chloe Creehan!!!!

Clearly there are people here that have more knowledge about the child's situation that I do and I appreciate the clarification that these are legitimate needs the family has. In the story there was absolutely no mention about how the requested items would effect the child's life. If she cannot go outside during the day, then I agree, a DVD player and television would have a very positive impact on her life and would be a legitimate request...same goes for everything on the list.

Please understand there was no ill intent toward Chloe or her family, I was simply questioning the validity of some of the requests. The article certinally left me with a lot of questions and did not do justice to what appears to be a very legitmate cause.

well this is her aunt again i know that the paper did not say the things they needed to but that was not on our doing the paper themselves knew the situation and didn't put want needed to in the paper. This is why you should not say things without knowing all the facts what i said before i meant call me if you want to meet chloe or talk to chloe.OH AND GO TO CHLOECREEHAN.HOMESTEAD.COM TO FIND OUT MORE ABOUT CHLOE....the newspaper new this site and didn't put it in there but thank you for writing back.

nanie danielle

Hello this Chloe Creehan's mom, I am writing to all the people out there that think that my daughters life is easy you have no idea. Her life is a life I wouldn't want my worst enemy to have. Her life consists of getting up in the morning and trying to take a bath for an hour or more which happens very often, once she has bathed up she is then laid or sat down on the couch to get her lotioning. The lotioning process is hard in its self, the means sitting still for about a half hour to be rubbed or touched and checked for any hot spots (blisters) then covered from head to toe with a lotion that is greasy and sticky. After the lotioning she then has to go through the process of getting dressed. Dressing is hard, have u every gotten out of the tub tried to put on a shirt that was a little to small, well that i s what she goes through just to get dressed on a daily basis. Now remember this is just the morning routine. This doesn't include the lunch time bath and lotioning, or the night time bath and lotioning. And she has to sleep with this lotion on so she is rubbing and scratching all through the night, which mean she isn't sleeping that well. For my child to even go outside it takes alot to prepare her for that, hat sunglasses and first and for most is checking the temperature and humidity levels if they are to high then she is not to be outside at all. The reason for that is because she will overheat(reaching temperature about 100 degrees.) Keep in mind brain damage can occur when a child's temperature reaches 104.The reason for asking for inside items for chloe is to make it so she can be educated and entertained at the same time. I can try and teach her the things she isn't able to experience outside.

Chloe is my life and has been for the past 3 years. All I am trying to do is get or give her everything she needs and deserves out of life. I asked a community members to help me get the awareness out to the community we live in and around the state for the fact that there is a ICHTHYOSIS AWARENESS week coming up October 5 through October 12. I feel that i am not a person to ask for help but when it comes to my little girl needing something myself or my family can't get or do. Where else am I to turn but the community that I have been raised in and the community that my little girl is being raised in.

chloe's mommy

WWW.CHLOECREEHAN.HOMESTEAD.COM

thank you for the additional information...all the best to Chloe and her family

Wow... first of all... If you don't have anything nice to say, don't say it at all!!! I have known the Creehan's my entire life! They are a very strong family and would not ask for help if help was not needed. If people would put their effort into helping others instead of putting them down, a lot could get done. For one, I will work my hardest to help this family get the necessities they need. I can not afford a lot, but the money I spend wastelessly each week on soda, snacks, etc. things that are not needed could be put to better use. I agree with Emmy, when we tuck our kids into bed at night we should be thankful they have their health and can go outside and play whenever they want. Something as simple as taking a bath/shower can be painful to this little girl. As far as people saying she is asking for too much, example a new house. For most people, we realize that this is not a NEW house, this is a place Chloe can call home and be safe that is not a small apartment. Melissa is not someone who would sit back and wait for everything to be handed to her, she is simply asking for a little extra help. Please think before you speak and remember this little girl has feelings too as well as her family, they do not need to be discouraged by "ignorance" for asking for a bit of help. The next time you are at Walmart or the Family Dollar, would it hurt to put an extra towel, washcloth, dishcloth or dish towel in your basket instead of a snack or bottle of soda you may not need?? The little things add up and I am sure if you offered her just one towel, it would be like giving her a hundred. Your in my thoughts and prayers Melissa and Chloe, I spoke to Danielle tonight and I will do all I can to help.... ~Kelly~

Since Chloe was born, I have talked to Chloe's grandmother at least twice a week trying to take in as much information as I could, just to have a better understanding of what Chloe was going through. It never really clicked with me how severe this problem was until I went out to the websites and started reading about it. I retired from the Air Force in December of 2007, moved back to Maine and finally had the opportunity to meet Chloe in person for the first time. With the skin disease that Chloe has, Chloe does not slow down and tries to live her life in the way she only knows how. The only way of life she knows is to do what she can and when something hurts that is her sign to stop. I watch Chloe as she plays and I wonder how she has the energy to deal with the disease that is tearing up her body and keep going without giving up. She is an incredible little girl. I have a 5-year old daughter myself and when my daughter gets the opportunity to see Chloe and be able to spend time with Chloe it is quality time they spend together, whether they play with toys or sit together and watch television if Chloe is tired. If my 5 year old can comprehend the pain and suffering that Chloe is going through I would think that some adults would be able to grasp the issue too. But, I guess that is what family is all about, taking care of each other.

Melissa is not asking for much for her daughter. For the person who questioned and was sarcastic about the list, thank you for apologizing, it means alot. Melissa is not asking for a new house, she is asking for a bigger place to live so Chloe can have some room to move around.

Here is an idea. Does anyone know how to contact any of these big companies that you always see on the talk shows giving away things and may be willing to donate items like lotions, towels, wash cloths, clothes, etc.....? I can only see where it would be a positive thing for the company name. If you do, feel free to contact one of the peole listed in the article and they will get in touch with me and I will follow through with contacting the companies or I will contact you and we will tackle it together.

Chloe, you touch everyone everyday, because you are incredible and a joy to us all. We will fight this battle together, whether we get help from anyone or we do it on our own. GOD BLESS YOU BABY GIRL!!!

i have known chloe since she was just a baby and i have known danielle and melissa pretty much my whole life. i have baby sat chloe in the past and all i can say is that she is a very loving little girl. she listens well, she is gentle, and she is very well eduacated for her age. this is a very rare disease and it is nothing you would wish on someone else. look at your kids and thank god they are healthy and they can go run around outside and play their favorite sports and games. chloe is a very special little girl that deserves the things on that wish list.

i have known chloe since she was just a baby and i have known danielle and melissa pretty much my whole life. i have baby sat chloe in the past and all i can say is that she is a very loving little girl. she listens well, she is gentle, and she is very well eduacated for her age. this is a very rare disease and it is nothing you would wish on someone else. look at your kids and thank god they are healthy and they can go run around outside and play their favorite sports and games. chloe is a very special little girl that deserves the things on that wish list.

Bless her little heart.. Best wishes too you Chloe. Thank you so much for sharing your story. May all of your dreams come true

Jeez people, everyone goes through a hardships?? This isn't 'going through a hardship'. This is life for this little girl. Daily - Forever. I don't even know these people, and I truly feel for you. I hope you get the items that will help you and your daughter live a more comfortable life. And if that includes a new house, with a larger space for Chloe to play in since she rarely goes outside, then all the best to you. Some people can be so ignorant. I have a child with a condition which requires daily monitoring and multiple injections. After reading your routine, ours sounds like a picnic. At least scollins can respond and admit that the article certainly didn't outline the detail of this skin disorder and the effort it requires from the mom. I agree, I got much more from these comments than what the article contained. Best of luck to you.

To Bethany and OutsideObserver. I'm glad to see that you have the perfect life and do not have the issues to tie you down. I would like to see you work full time and try to care for this little girl. Understand that this is a 24/7 deal and it is her life. Her mother doesn't get to just dump her off to anyone who is willing to baby sit for her, so she can go out and enjoy some time for herself. If the article would have been printed correctly you would have seen that she was not asking for a new house but only a bigger place to live. Also, she is not asking for it to be free either. Does this little girl deserve new items?? In my opinion, YES!! We are talking about a little girl that cannot go outside like a normal child can. She spends 95% of her time inside because of her skin disease. Here is my challenge to you. Go and see this child and spend 24 hours alone, taking care of her and see how you feel when you get done and tell me if you can do this and try to hold down a job to make ends meet for the rest of her life. Oh by the way. I am Chloe's great uncle and I have a hard time keeping up with her, let alone trying to take care of her as needed. Have a nice day.

Outsideobserver: Come on now, her uncle wasn't serious about strangers spending 24 hours with chloe and you know it.

Her skin condition is a disease, and there is more to it than SOMEWHAT controlling it with meds. So educated yourself a little, before you judge to harshly.

Chloe's mom is a working, single mother and her world revolves around her. It takes everything she earns to give chloe the meds she needs, not leaving much to provide the little things, as well as needed things like clean white 100% cotton towels, that you and your family probably take for granted.

As far as pleaing with the public for money, hmmm, i dont' think it was money that they are seeking, if you read the article! Unlike you, she live in a community where people care about one another and raising money and/or items for the less fortutite is a welcome event, not only here but everywhere.

And by the way, Melissa's love for Chloe is her strength, there is no motovation required!! THAT WAS THE DUMBEST STATEMENT I EVER HEARD!!

So do her Chloe and her family a favor, leave the subject alone unless you have something positive to say.

Melissa and Chloe really appreciate the kind words from some people! Some people really need to put themselves into Melissa's shoes for a few minutes. Anyone who knows Melissa knows that she is not the type of person who looks for HANDOUTS!! She would be the last person in the world ask ANYONE for ANYTHING! I am very close to Melissa and Chloe, Chloe actually calls me Auntie, I see Melissa EVERYDAY! There are days when she has spent every last penny on things for Chloe and things that Chloe needs that she doesn't have the money to pay for gas to get to work and she wouldn't dream of asking us or her sister for money! Even if offered she wouldn't take it. And for all you people that think that she is getting monetary donations heres a wake up call...everything that has been donated (which I might add has been a lot because we live in a very friendly community) has been used hand-me-downs from people who have upgraded and instead of sending stuff to the dump why not try to help a little girl in need?

If you guys would take the chance to educate yourselves on this disease you would understand that there is a chance that Chloe could go to sleep tonight and not wake up tomorrow morning. There is a chance that she could fall down and get a boo boo that would not hurt most kids but it could turn deadly to her! If she ever needed surgery for anything even minor surgery she would never be able to have it.

Please all I ask is that the negativity stops. Melissa feels horrible for asking for help but if you don't think that it is right that she is asking for help then DON'T HELP!! Simple as that... but don't make her feel bad about asking! Some people genuinely care they want to help..if you don't then that is your prerogative. But just remember someday when you need help people won't be there for you!!!!!

I LOVE YOU CHLOE SO MUCH....I WISH THE WORLD GOT TO KNOW THE SWEET LOVING LITTLE GIRL I KNOW. XOXOXOXOXOXOXOX

LOVE AUNTIE DANIELLE

hello everyone, I want to thank auntie danielle and auntie becky and uncle andy for their understanding, Chloe's life is not that easy but with these items she will have the ability to life a life as normal as possible. I want everyone to know I appreciate all the items that Chloe has recieved. If anyone wants to contact Chloe please call her at her apartment 746-5659, or at her Nana and Papa's house 746-0015 or Aunt danielle 746-5078. I think that people will see what they are helping. Please feel free. Thank you

Why would you post phone numbers?

Yeah, i agree thats kind of crazy!!

I posted them because I am tired of people of assuming that they know what my little girl needs and if they are interested in getting the Real story they can feel welcome to contact us. If you contact us it means you are interested in the skin disorder my little girl has. that is the reason I posted them for you.

Thank you

Chloe's Mommy

I am not UNGRATEFULl , I am just wanting people understand that i am grateful for everything i have recieved and want to thank them all and I am sorry if i offended anyone that has made donations and items to me and my little girl they are greatly appreciated. Thank you sorry justacommenter if i offended you. THANK YOU ALL

Melissa, I met you and Chloe a few years ago at a friends wedding in Milford. I think you are a great Mom ! My eyes filled up when I saw the blisters on Chloe. Do not allow these hateful people bring you down. Forgive them , for they do not know what they have done ! For anyone out there wishing to post a comment..please check out the site before speaking of something that you know nothing about...

CHLOECREEHAN.HOMESTEAD.COM

Melissa and Chole GOD BLESS YOU !

this is chloe's aunt i would just like to ask outside observer if you are willing to tell us who you are cause for some reason you know a lot about the things chloe has gotten and only a few people have been told about the cash and the tub coming from a lady that has cancer.....I also want to thank everyone who has helper us I am so glad to see the love and support for chloe, I just don't want people thinking we are just out for things we don't need to help chloe, she needs alot of thing to help her and something as simple as a dvd player that will give her something to watch on her long trips to the doc. and in the house when it is to hot for her to be outside. I understand that some people are going to be mean and write bad things. I just want the world to help and understand chloe not just for her but her mom to melissa is my sister and she also has a skin disorder and need allot of help for the both of them. Melissa only really wanted the world to get educated on chloe and others like her to make all of there life's a little easier. OH and just so you all know she never asked for all the help a very sweet and kind lady from our town is doing all of this to help chloe.On her myspace page I am the one that put the pictures on there and I know that they are not all of her that is because i had no access at the time of pictures of chloe and what she looks like I am working on that right now. but the are a couple on her website that show her skin. I posted the ones of people with disorders like chloe so the world could see how bad this disorder really is. I know we all put are numbers on her and we did it just for that reason so people could call and ask about chloe and I have had people call me I am willing to tell you anything you want to know answer any ??? you may have just call me or e-mail me 207-746-5078 or mainegirldanyell@yahoo.com My name is Danielle Day I live in Medway Maine Get in touch with me if you want.

chloe i love you and i am sorry some people can be really mean.

love you little one

aunt danielle

"only a few people have been told about the cash and the tub coming from a lady that has cancer..."

People know about that because it was posted in the article!!!!

Sounds like she's gotten most things she needs. And with $1000 cash she could probably buy the rest of the things she needs. I hope everything works out for Chloe and that there is one day a cure. Poor girl.

I would also like to add a question? What kind of home is Chloe's mother looking for? One to be given to her, or a bigger apartment to rent?

All she wants is a bigger place to live the apartment she has is only really a one bedroom and way to small for Melissa and Chloe. Thanks for asking that question I am glad you wanted to know. I just want to add that yes $1,000 sounds like a lot but not when Chloe's creams coast about $20.00 a jar. She go through about 3 if not 4 of those a week so about $100.00 just for that cream...thats not all the creams and meds she needs and most are not covered by her heath insurance. I am glad that people are asking us questions thats what we want. The only way anyone is going to understand what she has and what is really going on with her is to ask not just pass mean comments. So thank you everyone and please if there is anything else you want to know don't hesitate to ask.

love Chloe's aunt Danielle

Well why doesnt she look in the paper for a bigger place to live?

Imagine...

a child with painful wounds similar to burns covering most of his or her body.

having to wrap each tiny little infant finger with Vaseline gauze and then cover it with gauze to prevent the hand from scarring, webbing and contracting.

never being able to hold your child tight because if you did, their skin would blister or shear off.

a child who will never know what it's like to run, skip or jump, or to play games with other children because even the slightest physical contact will injure his or her skin.

a child who screams out each time it is bathed because the water touching its open wounds creates incredible pain.

a diet of only liquids or soft foods because blistering and scarring occur in the esophagus.

an active baby with his knees soaked in blood from the normal act of crawling.

a teenager with stumps for hands, the affected fingers scarred/healed together.

OutsideObserver, how will sheets for her full-size bed help Chloe? The little girl is three, and from the sounds of it, is often in pain with blistering and open wounds. Maybe sometimes she wakes in the night in pain and wants to climb into bed with her mommy. It seems as though she's asking for 100% cotton linens in the event that happens. Sounds to me like it would be pretty beneficial for Chloe.

For the folks posting negative comments about this family, and I don't even know them, just let it go. If you don't agree with what they're asking for, then just don't donate to them. Posting comments that this mother is ungrateful is hurtful and has got to make her feel bad. I'm guessing she feels bad enough.

The first part of this comment is directed towards Melissa and Chloe. I want to apologize for putting a challenge in my comments for anyone who wanted to, to come and spend 24 hours walking in Melissa's foot steps and going through a typical day taking care of Chloe. That is something that should be put out by Melissa if there are any people who wish to see how life is taking care of Chloe.

Now to OutsideObserver. The comment of the challenge was to spend a day with Melissa and see how hard it is for her to take care of Chloe and try to work a job to make ends meet. Everyone is entitled to their comments, but I ask that not only you but everyone else, if what Melissa and Chloe are asking for offends you in anyway, please don't post a comment. What they have received from people within the community is not really any of your concern. When someone donates toward their cause, they thank those people in person. I'm sorry if you feel that they should post a thank you in the comments of this story.

Yes, the sheets are beneficial to Chloe due to the fact that she is in pain at night and does spend some nights in bed with her mother.

I will end with this. This article was not only published to try and help defray some costs on Melissa to help her daughter, but to also raise awareness for the disease that Chloe has.

If you have negative comments why dont you take them to an article that could use them. Sounds like a couple of you have an axe to grind?

I still don't understand why she isn't look for a bigger place for her and Chloe? I mean...how does someone GIVE them a bigger place or house? Clarification on that would be great.

Melissa has to stay in the area where she has support to take care of her daughter. Within the community that she lives there are not too many opportunities to choose from. Not sure how much clarification you are looking for.

Hi mellissa and chloe This is Julie, from Medway. I have waited on you and your daughter a couple times at a local restaurant and I have seen first hand, and can only imagine what that little girl goes through every day and thank god my little girls are healthy every day but whether your child is healthy or not they are a blessing, and the smile that little girl has on her face every time I see her, just goes to show what a great mom she has becuase she is sooo happy. which is less than i can say for some in this town..Mellissa for someone as young as you are , most people wouldnt of been able to handle the challenges you handle every day and you do it plus work . I think you are that little girls hero and I would be proud to say mine..Keep doing a great job and dont listen to the negative things on here only you, your friends and your family know the true challenges you face and what you truely need for your little girl and no matter what way you go about it your doing your job , your going out of your way to make that little girl happy, safe and comfortable. I have seen people get things that sure as heck didnt deserve it as much as you do so do no listen to the ignorance in this world its coming from people that dont have much of a life of their own that they have to trash someone elses. keep up the great job your doing as a mom....Julie

I JUST WANT PEOPLE TO KNOW WE ARE HAVING A FUND RAISER AT AL'S BAR HERE IN MEDWAY THIS SAT. THE MONEY FOR THE 50/50 IS GOING TO CHLOE. IT WOULD BE GREAT TO HAVE A BIG TURN OUT. HOPE TO SEE YOU ALL THERE.

CHLOE'S AUNTIE

DANIELLE DAY

Well I guess the clarification I wanted was what she wanted given or helped out with as far as a different home. I understand she needs to stay in the community but what housing situation is she looking for? If she needs help with rent or something there is state aid out there to help with that. I guess I don't understand how others in the community can help her with different housing. I'm willing to help in any way...just need some direction.

o.k. this is the deal page skimmer I am Chloe's aunt and I am willing to talk to you on the phone or by e-mail if you want to know more about Chloe or how you can help. I mean this I am doing everything I can to get the word out about Chloe. If you or anyone else want to know more about her or how you can help call me at 207-746-5078 or e-mail me at mainegirldanyell@yahoo.com. We need all the help we can get.

And to help you understand better what we wanted to do was try and get my sister and Chloe a home A PLACE CHLOE CAME CALL HOME....a place that has room for her to run and play, big enough for all her stuff. A backyard so she can play outside when it is cool and not so hot. She has to stay indoors most of the time and has no room to play. I wish everyday for her to go outside and run and jump and just play like all the other kids. But I know that will not happen. If I could do anything for my sister and niece I would get them a home like you see on extreme home makeover where the temp. was controlled so she had her own indoor playground,a bo bo room so when she is sad or had a bad day or if she is not feeling all that healthy she has a place to go. I would rather see her get a home not a apartment. Just so Chloe could have a place a stable place to call home. I hope you have gone on her page I went on today I put really pictures of Chloe not others like her but really her. It is www.chloecreehan.homestead.com I WANT TO SAY THANK YOU TO EVERYONE THAT IS HELPING US AND EVERYONE TAKING THE TIME TO LEARN ABOUT CHLOE.

Chloe's anut

Danielle

bless your heart Chloe Ann...

if there is another fundraisor that doesn't include going to a dive like Al's bar I will be the first one in line...

Well, I am a little late in posting . Just read the comments. Melissa and family. I am sorry you are in a situation where you are forced to defend yourselves to ignorant, evil people. Believe me, as a parent of a child with special needs, I encounter this lack of compassion daily. Please, please..... just surround yourselves with your loving family ( so thankful you have one) and friends. Keep your head held high. Remember, that your life as a mother is a marathon and not a sprint and you take care of yourself..... It is people like the ones posting , you know the ones that lack compassion that will suck the life from you. Don't let them. Do not respond to them. That is what they want. Their lives must be miserable. Something that we just will never understand...O.K. ? I hope you and your friends and family will waste no more of your time and strength defending yourselves, EVER!!! I know. I face it everyday and each day................. My child is twelve now and I have wasted too much time fighting,,,, defending and crying. keeping myself isolated because I am too afraid to ask for help because of the very reason you are faced with today and everyday. Ignorance and lack of compassion from OUTSIDERS ( how ironic) it will eat you up inside if you let it. So, please take this as it is........ as it always will be ....... and keep yourselves surrounded by love and support. P.S. take care of yourself your doing a wonderful job!!!!!

Missy, Chloe is an Angel here on earth. Don't bother trying to defend yourself or the needs of Chloe. People are ignorant and heartless....that's just the way it is. Just continue to be a great mother and person and good things will happen for you and Chloe. Tell Chloe Auntie loves her and we will see you soon.

I love you!

Sissy

Can any of the family members here give an updated list of what she still needs. I would like to put together a care package and mail it (if I could get the address) but would just like to know what hasn't been donated yet...as far as towels, sheets...things like that that can fit in a box. Thanks

http://chloecreehan.homestead.com/index.html

pageskimmer go to that link, the address is posted there. You will also learn allot more about Sweet Chloe

This message is to Pageskimmer...This is Danielle Chloes aunt. if you would send me an email or give me a call I can give you an update on what she still needs. I don't want to give Chloe's address out over the internet but I would love to be in contact with you. mainegirldanyell@yahoo.com or 207-746-5078. Thank you so much in advance!!

Alright I have been reading this and im very upset. First of all I have a daughter who also has EHK Ichthyosis. well if you look on the website ehk does not have webbed fingers and the contracting that is a whole different form of ichthyosis. You can hold your child just like any other child it does not shear off as easy as they are making it seem. She will be able to run skip and jump. I feel like she wants a pitty party and is looking for free stuff. As for the diet of only liquids or soft foods because blistering and scarring occur in the esophagus thats another lie. The insides of a person with EHK are normal. She talks about stumps for hands well thats harlequin ichthyosis get it right there are 28 different forms of this. Also you can have your doctor fax your information and alot of drug companys give free supplies. Look up aquaphor on line. Quit making it sound worse then what it really is. She will not die from this condition. She will just have to lead a harder life as does my daughter but im not out begging for free items i am so mad.

First of all I am Chloe's mother, I am very sorry if I offended you by the poem but a friend posted think it had to all forms of ichthyosis not just EHK. I am sorry if i offened you by getting help for Chloe and but I am not the one that is asking for the help. A woman in my town is the one that is asking for the help for us. She sees us and know that I am single parent, working full time as a PCA. The woman in my town know that I struggle just to pay the bills to provide a place to live, eat, and get what lotion that I can afford. I struggle just to provide just enough to get by. The lady in my town knows that I have been doing this with family help for almost 4 years and we have educated ourselves as much as possible on the internet and doctors that we visit and we feel there is so much more to learn about Ichthyosis disorder and all other types. But we have tried to contact people with EHK but have been unsuccessful to find any located near us. But I would love the opportunity to talk to you and possible get information from you that may help me and point me in a different direction.

I first contacted this lady in my town to just help me with doing something for Ichthyosis Awareness week in October. I asked her because she knows alot of the people in town that are in high positions on committees. I wanted to educate my community for the sake of my little girl. We wanted to let the community know that she is no different than any other child in my community. She can play and have a good time she just has to be careful. I live in a very, very small community and where no one has EVER heard of this disorder of anything like it. I wanted to educate the schools, teachers and children that she is going to go to school with that she is not a bad person or that it isn't anything that they can get or contract.

I am tired of being looked at, looked at weird and have my little girl ask me why people are staring at her, or having people ask herr why she smells the way that she does. I as an adult suffer from psoriasis, I remember how I was treat with it and I am trying to make it so that my little girl doesn't have to go through that teasing and taunting that she may come across in school. I just want to EDUCATE my community and the state of Maine and the whole world that ICHTYHOSIS is out there. That the people that suffer from this are people just as people with out the disorder.

Also the fund raising aspect of this also goes to the F.I.R.S.T. Foundation to help keep educating us and other people on the disorder. We have had a man in town make us car magnets to support Ichthyosis Awaressness. We have also made window degals for car and trucks that support Ichthyosis Awareness not just EHK.

We want the world to know what the word ICHTHYOSIS means and what it is.

P.S. I f you would like to contact me my home number is 1-207-746-5659 and my email address is macreehan@yahoo.com

see what I mean, even another parent w\ a child that has the same disorder will turn her back on you. It will be relentless. Please do not defend yourself........ As Don Henley (Eagles) sings " In these days , folks will judge you, even though they don't know you at all,and I might not be there to catch you everytime you may fall."............At least you are making sure you spread awareness.........and for all the people who just cannot grasp the willingness to help one of there own....... I really would never wish this struggle that any parent of any child with special needs or an illness should face, I hope your child or grandchildren are healthy and happy one day....... you may face a struggle like this one day...... maybe look back.... remember how you responded ...... and learn........one can hope, right? Rember , good people will walk with you , not behind you or in front of you...I hope you understand what I mean , keep your chin up.

outside observer , I won't waste too much of my time on the likes of you... of course you don't see where the other parent is turning their back... I knew you would be the one to post again ha..( so predictable) that is why I made the reference about " outsiders" . Kinda hoping you'd take the bait. The more you write .... the worse you look.. Do not forget who is watching. HE has a plan and so far , I'd say by your judgement and lack of compassion and scorn , you will be the one having a big pitty party. Maybe not today.......................but , one day . ( sigh.) Good luck with your life , your gonna need it.