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$1,061 of $3,000
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19 donations

This fundraiser ended on 01/20/12

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Please help offset medical expenses and financial burden.We have to get our son to Ohio for some surgical procedures and testing!

Layton age 13 is affected by mitochondrial disease as well as Amanda his mother.This has left an extreme financial burden on our family.With Layton's fathers hours being drastically cut at work,the daily medications are so overwhelming,the traveling back and forth from Ga.to Pa. and Ohio is so exhausting and we are in great need of funding for his upcoming trip to Ohio.It is imperative that he makes this trip as he needs testing and procedures to try and find out why his stomach is not functioning properly!The Drs. can help him but he has to have this done.Without this his stomach could shut down and he may never be able to eat again and then we would have to consider more drastic measures!We have a deductible we have to meet as his insurance keeps denying many things due to exclusions under our policy, money for food and transportation to and from the airport.Please support our family by making a small donation if you feel lead to do so!If you are not able to all we ask is that you spread the word for us!No amount is too small!

Let me tell you a little about Layton.He was born fullterm as what we thought a healthy baby other than being very colicky.Around the age of 3 months he started with chronic sinus and ear infections.He also had strept throat alot.He would run ver high fevers and the doctors found this to be sort of strange because he was so young.This continued till the age of 1 when they finally decided to remove his tonsils and place tubes.Things got better but not for long.He had a few delays such as walking,talking and sucking problems but nothing to have made us think that he had a serious genetic disease that would affect him the rest of his life.By the age of 4 he started keeping pneumonia,upper respiratory infections,croup,major stomach problems and severe leg pains.The Drs. would then tell us viral and growing pains!This became a vicious cycle day after day.He is now 13 and still living with the severe leg pain that the Dr.told us were growing pains.After countless antibiotics and countless Dr. visits and episode in 2008 changed Layton's life forever!
Layton caught the H1N1 flu and God has blessed us by keeping him alive!He almost did not pull through!He was hospitalized for a while where his organs were swelling and trying to shut down!He was so lethargic he could not pick his head up off of the bed.He was the only child in the school at the time that they were aware of that had this.We then felt something was very wrong!After starting to recover he had kept several round of pneumonia leaving our family in constant fear that he would not make it.Even after recovering with the numerous medications and IV antibiotics he still was not acting right.He continued with lethargy and his pediatrician was wanting us to see a geneticist because she felt as though something deeper must have been going on with all the muscle pain he was having as well as the family history.She put us in contact with one and the diagnosis of mitochondrial disease began here.We had a very long journey from here but were eventually sent to Children's Hospital of Pittsburgh to see a specialist due to the lack of Drs. in this specialty where we found out there was hope and help.Not much but it was up against us and we had to face it.She gave him the diagnosis based clinically off of some labs and different testing that were in research at the time.His mom,sister and father had completed some of the same testing which also showed to be positive so his sister(Katy) and father (karl)are also suspected to have this as well.This currently is being looked into.The disease tends to affect mutltiple family members except for on a few occasions.

In 2010 I Amanda the mother had a muscle biopsy to confirm that I more than likely had this as well and after a long 3 months received my confirmation that i was positive and carrying a strange gene as well.

Shortly after this there was concern that Layton would also need a muscle biopsy to truly confirm that mito was affecting his life as well as his mothers.3 months later we received the confirmation we were expecting but did not wish to hear.This situation has turned our life upside down.The daily struggles,Dr. appointments,therapy 3 times a week,traveling for care and just the physical and emotional end of this is so overwhelming!

Layton suffers from many troubles including major GI problems,nausea,vomiting ,muscular pain,severe leg pain, weakness,POTS,dysautonomia,numbness throughout body parts,severe fatigue,processing disorder,migraines and his new recent diagnosis of primary immune deficency.He has a feeding tube that keeps him hydrated daily,and we do immunoglobolin therapy once weekly.His stomach is not functioning properly and there a few surgical procedures they can do to help him.We desperatly need to have this procedure done to see what they can do to help.If not this could lead us to having to cut all of his food out and to do something more critical for him which we are trying to avoid by all costs.We have already been in this situation once and had to go several weeks with nothing by mouth,only by Gtube.This was extremely difficult and especially to a 13 year old.Layton has to take 17 medications a day and no child should have to go through this.Please please help us spread the word about mitochondrial disease!We need more knowledge,more physicians and a cure desperatly!We loose children everyday and it is so heartbreaking!

The 2,500 amount that we are needing is just for one trip to Ohio.We have to take numerous trips back and forth to Pa. and Atlanta as well,pay deductibles and co-pays,medications etc.Please keep this in mind if you are able to give to help out.Without going into major details my husbands job is in danger at this point.Our goal is to move around May when my daughter graduates to get good medical care for our son and not have to do all of this traveling but we cannot do this without your help!Please if your budget does not allow you to help we understand but please spread the word.If nothing else we need many prayers!
Thank you and many blessings

If you wish to mail a check to the trust accounts please make them payable to:

*Supplemental Needs Trust for the benefit of Layton Butler

* You may also choose to pay at Give Foward with a credit or debit card directly!


or if you wish to mail a check in Layton's name you may mail it to his medical savings account.
address to :
Bank of Perry
1006 Main Street
Perry Ga.31069 on check please put Layton Butler Medical savings along with his birthdate (3-27-98)

If you prefer to mail to home address you may call me (Amanda) at 478-287-5486.
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