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Organized by: shelly sara hall


shelly sara hall via Crowdrise
July 23, 2015

We are admitted into duke for haley eeg ct mri seizure tracking brain growth n activity and organ scans. Please keep us in prayers ty. See More


Haley is my beautiful sweet 5 yr old daughter, she got delt a pretty rough hand from the very begining she quit breating at 2 days old and was rushed the NICU at duke hospital where many tests and procedures took place my life crumbled when my daughter was. Just 5 days old they sat my husband and i in a consultation room w many many dr. And new faces i was scared to death. There was cardioligist gastrofic dr chromosone and genetics neuorlogist neuro developmental provide and dr. Sharon freedmon one of the top pediatric optomoligist in the world as well as the hospital social worker and conseloras well as the duke hospitals chapel priest. I was so confused, they proceded to inform us that our daughter who was only 5 days ago a completely healthy clean bill of health child had a very rare cromosone genetic neuro developmental disorder called retts syndrome. I dis not know exactly what that was where im from its unheard of so they proced to tell us how haley during her forming sometimes a freak thing can happen where the cromosone is mutated meaning part of haleys x cromosone was missing just not there , they proceded to inform us had she been a boy she would have died in the womb or at birth given boys only have 1 x cromosone. The thing that made it the hardest to understand was usually girls w retts it dose not offset till later on in toddler age to early 5-6 years most girls look and appear normal and grow adequately and meet milestones and then later lose abilities as of talking walking they lose use of thier hands ect... and become developmentally delayed, however it was very rare for a gil w retts to be missing the particular part of the cromosone as haley was therefore haley had 3 large holes in her heart to the extent she had blood fluttering in complete opposite direction she was at constant and admediate risk of congestive heart failure. She had a enlarged muscle in her stomache that was putting pressure on her organs she had biliteral cateracts on both eys there for my sweet little angel had never seen anything and was blind, she had severe acid reflux to the extent everything she took in would projectile vomit right back up and shed choke and turn blue . She had a rather rare form of seizure disorder she had a EEG that showed she had every form of siezures known to man and was at risk of brain damage at any ti.e she was at times having up to 22-25 seizures a day . They kept exsplaining and the more information they gave the more my world shattered piecw by piece, haleys exspected life capacity was 13-14 years at best. I was lost they exsplained to us they understood if we wanted to sign our daughter as a warden of the state to become a perminant resident of the hospital bc she would always as long as she lived have sever medical problems and require many therapies surgeries medications and life threatening illnesses i went from upset and crushed to angry and hostile how dare they suggest i just give my daughter away and walk away and just bc shed have special needs and it be a struggle absolutely not i concieved her i carried her in my womb and bonded and nurtured her and as long as god would allow me i would care for her and be her mother i couldnt believe it was suggested, in later days i found out its more common then you think its absolutely sad and inhumNe to me how many children just get left in icu and the parents slowly quit coming as thier babies fight for thier lifes and cry q the only one to comfort or nurture them are completley over worked but very dedicated nicu nurses i couldnt believe it had it been allowed id of sat right there w them and held and rocked every single one and took every one home w me but obviously that was not allowed . My daughter spent 2 and a half mnths in the nicu she also had a very weak immune system i was barely able to hold and coddle my own baby it devastated me. She finally could come home but it was extremly short lived we made it home for a total of 36 hours before we had to call ems to our residence which was w my in laws obviously i wasnt leaving my baby in the hospital alone and neither was her daddy he at the time was working for dot the state doing landscaping well not any longer we lost our trailor and also had a almost 3 yr old son so into the inlaws we moved . Haley was having uncontrolable seizures and vomiting blood as well as bleeding in her bouls and started perjectile vomiting again. We then descovered haley had a allergy called formula protien allergy she was internally bleeding and had to immidiately have 4 back to back blood transfusions my blood type matched so they had me a recliner placed beside her craddle in the childrwns ward and run a blood line from me to her i dont remeber a hole lot bc i became very waek and dizzy and had passed out many times they where continuously urging me to drink orange juice but i couldnt stay awake 2 days later they informed us haley needed a nissan wrap surgery and to place a wrap of a sort around her inlarged stomach muscle as to take pressure off her little organs so we went thru that they exspirmented w over 76 siezure meds before they finally got it right she needed a series of 3 seizure meds together to help maintain her siezures they removed the cateracts as well. I was overwhelmed w happiness my daughter would actually get to see her familys face her mommies face wrong again dukes eye center forgot to replace haleys lens on her eyes and to go back that soon and reoperate would cause permanant damage to her cornias and shed be blind eternally wed have to wait until she was 3 yrs old. The first year and half off and on haley and i resided at duke hospital she maybe remained at home a total of 4 mnths and it was not consecutive my son had to come visit me n his baby sister at the hospital daddy stayed as much as possible but we also had a son at home n my mother in law fell ill herself w ecoli poision to her blood stream so we made the best of a very scary situation. Ill skip ahead to haleys 3 yr old bday we where excited haley would get her lense implants and shed get to see us well nope again let down by duke haleys brain had already blocked out 98 percwnt of vision she would remain blind forever knowing very little light and no shape or form of any figure i was devastated. Rewinding a bit 11 mnths after haley was born i gave birth to my son ethan ty jesus durring one of haleys brief stays at home in which 6 days later my mother died at the age of 40 yrs old pnemonia fluid went to her heart and she died in her sleep. There went my whole family support team down the drain my daddy died 1 yr later at age 43 of a sudden heart attack but in reality he died the day my mother did and his body just walked the earth w u and i he was no longer the same fast forwarding in the aftermaths haley has a feeding tube she developmentally is stuck at a 2-4 mnth old state never crawled walked never ate never spoke she coos and makes aughhhhh nosies we have zero form of communication ive had to learn to rwad her body lauange which is not easy w a child as of a infant state of devolpment and mind. Heres where haleys and my reasoning for fund raising begins obviously w a child as sick as haley and 2 other childrwn it has became physically impossible husband or i to hold a full time job and trust me when i say we have tried between dr visits specialty apts therapys and still trying to stretch ourselfs thin and have time w our 2 boys whom both are adhd children w emotional depression and axiety disorders my almost 8 yr old has been suicidal at times and has severe seperation axiety and has nightmares that his sister or i will die very often and is very emotional. Between hoslitalizations and my mother and father passing my 4 yr old had to learn to self enertain very you.f and is a bit resentful and overclingy he had a delay in speach he could speak just wouldnt until speach therapy which now bless his little heart can speak more fluently than most 6-7 yr olds but is very very attention seaking to the exstent of self harming for attention he hits himself bangs his head in floor and walls as the very sound of the word no hes super clingy to men my cousin moved in w us after my mother passed to help bc i turned into a robot i did things knowingly they had to be done but do not remeber the first 4-5 mnths of my youngest sons life he slept on my cousins chest the first 2 years of his life and curled up to him on sofa or recliner the other 6-7 mnths till my cousin met his wife and moved out he then formed something called adjustment disorder and seperation axiety he can not deal w excepting changes and is quit spoiled to say the lease lol im very grateful for my cousins help however mathew llamas u need to come kidnap your seragant child sometimes he still at age 4 crys n tells me hes telling his uncle matt that mommy and daddys mean when we say no or bed time or pretty much any thing he dosent want to hear . I tell u all this not to devise from the purpose but to give u a bit of understanding im not someone whos proud and okay to ask for help but want you to have a understanding of our lifes and y employment has been extrwmly hard for us to keep given all the situations . About 4 mnths ago we where informed haleys brain and organs had not grown in about 2 yrs which i did not understand how this slipped thru one of the supposidly best drs and hospital in the world they informed us haleys organs where extremly to small and over worked and would start to fail on her very soon and due to it being all her organs she did not qualify for a transplant reciepiant. Im sure if you are a parent u can unserstand my frustration i felt when i was told even if it was rwalitives that matched they would not waste perfectly good organs on someone when eventually it would repeat its self given her brains not growing to send signals for organs to continue to grow. To tell a parent even if only for a little while to give your daughter organs would be a perfectly good waste was cruel and harsh to say the lease. They gave haley until christmas exspectancy to live of this year 2015 her kidneys where already in stage 2 of failure 2 mnths ago and they say once one organ goes they will all go one by one rapidly , there was nothing that could be done. Again i like the many rollar coasters we have been thru w haley i became devastated depressed i went thru about a week of going ro otic state again attending to haleys needs feeding and cleaning my children i became mute and numb then i had a dream one night of my parents sitting in a garden of lillies laughing and sure enough my baby gorl was running to them arms outstretched laughing and she said pawpaw her voice was like a angels bells to me my dad looked in the direction as to look at me and worded fight. I woke up covered and sweat and tears unable to breath i was happy but again i was scared i jumped up and went to check on haley immidately and she was sitting up clapping cooing and laughing at absolutely nothing she sleeps w a radio softly playing w country music she loves music a song came on the radio a verse stuck out to me it said the fight aint over until u give in and give up so we fight for the lords will and love amen. I felt like thats what my daddys message to me was to fight dont give up and once its over haley will be okay bc grandma and pawpaw will be waiti.g in the field of lillys to hold and love and take care of her.shed be okay even once she was no longer mine here on earth bit im not ready to give her back to jesus and my parents not just yet see what u may not know by now is haley is strong and like her mama she is fighting . As soon as 8am arrived i got on the phone after doing research all night i spoke w many childrens neuro developmental clinics and hospitals for children kidney transplant offices social workers i contacted shriners which is a hospital just for sick chdren that medical treatment is free i finally got results and i called haleys chromosone and genetic dr at duke and demanded a sit down w him asap i went to duke the next day and told him about a surgical procedure shrinners chromosone dr had descussed with me. Given my husband is haleys father n well i carried her so shes definitly mine wed need series of brain scans and lab work done to confirm we r both her biological parents and to insure we had no life threatening diseases that could be transfered to haley ect... after that they would willingly do the procedure for free where my husband i will be put to sleep and they can withdrawl blood cells and particles directly from our organs and inject them directly into haleys organs and it will allow her her organs to start growing it will not permenatlly do so we will have to do this several times and they cant compensate for the lose growth so her organs will always to a degree be small and a bit overworked but they are confident that this will give haley years rather than mnths given that just this past friday haleys drs called saying her cts abdomine xrays and ultrasound came in and they needed to talk w me i was at duke raliegh hospital w my grandmother whoms dieing of cancer for a apt i said u cant really upset me more then u have so judt tell me now they informed me in less then 2 mnths since haleys last screening that now her liver 71 lercent is not functioning. I felt like the world went blank i just found a possibity and i may be too late. The hold up for haleys procedure is the testing on my husband and i. My husband has no insurance and was denied medicaid and this new insurance thats supposedto be so great and affordable the hospitals grants will not allow the coverage bc its still considered a expierimental procedure even though its been going on for 7-8 years w a 81 percent sucess rate on right at 10,000 patients again i felt theres just no rainbow at the end of the rain cloud. Ive been to churches ive been to social services ive been to hospital social workers and finacial aid charities local stores police department and even local firedepartment trying to seek assistance to get this done. I have attempted bake sales hotdog sales ect... i raised $22.00 at my bake sale n turned away evey where i tried to get assistance i started a go fund me account and ty jesus have raied $800 over 12 days the problem is haleys going down hill and fast i fear it will be too late we have to have $1750 upfront for my husband and they will allow payment plans on remaining balance for testing originally my ssi disability medicaid was going to cover my testing until i got a call today at 6 pm while at dr myself to inform me my insurance has now denied me coverage due to its a expirimental procedure pre testing theydont want to cover something. That they cant be certain will work which might i add is crazy there will never be 100 percent positive anything will work for anyone w any health issues so i had set my go fund me at $2000 to make sure after fees ect that the 1750$ required for my husband qould be covered however now im finding it qill need to be $3500 and thats only if the hospital will allow me to set up a second payment plan for remaining testing cost for myself the total cost for one full testing is $3,950 each which i do.not know how i will cover the payment plan on 1 of us more less both of us we r struggling now to keep gas in the vehicle for apts and keep bills paid as it is . My daughter has become my universe my reason for keep going my whole life since the day she was born has been revolved around her medical and keeping her alive please if u can find in your hearts and are eligable to do so please consider joining our mission to help haleys fight for life cause and any prayers and sharing of our journey is a great help no amount of contribution is to small and is greatly appriciated and greatly needed and be a true blessing from god above and from your family to mine we havent had a easy cushioned road and by no means exspect it to be in the upcoming future but we rwally could use a break something to look forward to im not asking u to pay my light bill or buy me a new car im asking please if u can help me save my daughters life shes been through so much and deserves a bit of life if we can get these test done followed by the procedure needed i have full faith and confidence my baby girl will get just that if her organs are in better shape she can have her hip replacment and start using a stander i can take her off of bed bond house arrest excelt drs and she can get oht and enjoy a little bit of what god made in this world and offered to us all that we all take for granted u dont realize how lucky we r to.see walk talk get a taste if food brwath of the fresh air ect until u meet or live a life around someone who cant its heart breaking .#pleasehelpsupporthaleysfightforlife. Ty for your time and efforts prayers and contributions in advance . Prayer for haley hall


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shelly sara hall

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