Medical coverage for Aleyah Smith.
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Hi, My name is Aleyah
Aleyah was diagnosed with MPSI hurler syndrome when she was only 14 months of age. She began enzyme replacement about a month after being diagnosed and under went a cord blood transplant at the age of 18 months. At that time she endured alot for being so little. She was put through cemo to kill of her cells so she could recieve the new donor cells in hopes they could graph and that it would help her life expectancey.
As a parent of a child with a "terminal" condition it is heart wrenching to say the least. Seeing our only child at the time go through Chemo/radiation, numerous test, sedation, IV's and then the transplant was hard, but worth it. Her little body faught through and now she is doing great. BUT she is not out of the woods. Aleyah has had many sedation proceedures which is scary with children who have this condition as there air ways are very limited. She has had bialateral knee surgery (plates in both knees), trigger finger release (is due for another one on her other hand), she has been sedated for MRI's and cat scans, dental work ect. We do know she will be faceing back surgery, hip surgery, and then the removal of her plates with in the next few years. She currently see's 9 different Dr.s who follow her giving her the best care we can. She alos wears a back brace for her kyphosis and wears glasses for her cornia clouding.
Aleyah was the only child for 5 years up until the month of Feb 2015 when we found out we were expecting. We were beyond scared and had alot we went through to make sure we were/would do everything possible for our newest edition. After months of waiting and numerous blood draws, and a CVS test we were informed that our little peanut wasn't effected. We were told that she would be a carrier of the gene but wasn't affected by hurlers. In Octoboer of 2016 we welcome aleyah's youngest sister Jaina to the family.
MPSI/Hurler syndrome is a terminal disease but if treated in time can give family hope. Most kids with hurlers if not diagnosed in time have the life expectancey of birth to Ten.
Hurler syndrome/MPS I, along with six other MPS diseases is a mucopolysaccharide disease that is relentlessly progressive and potentially fatal. MPS I has also been called Hurler, Hurler-Scheie and Scheie syndrome . Hurler takes its name from Gertrude Hurler, the doctor who described a boy and girl with the condition in 1919. In 1962, Dr. Scheie, a consultant ophthalmologist, wrote about some of his patients who were more mildly affected. Individuals who seem not to fit clearly in either the severe or the mild end of the disease were said to have Hurler/Scheie. The specific disease names have been replaced with the designations attenuated (diminished severity) and severe MPS I. There is no cure for MPS diseases, but there are ways of managing and treating the problems they cause.
We all have genes inherited from our parents which control whether we are tall, short, fair, etc. Some genes we inherit are “recessive,” that is to say we carry the gene, but it does not have any affect on our development. MPS I (Hurler-Scheie syndrome ) is caused by a recessive gene. If an adult carrying the abnormal gene marries another carrier, there will be a one in four chance with every pregnancy that the child will inherit the defective gene from each parent and will be affected with the disease. There is a two in three chance that unaffected brothers and sisters of children with MPS I will be carriers. They can be reassured; however, that, as the disease is so rare, the chance of marrying another carrier is very slight provided they do not marry a cousin or other close family member.
Is there a cure you may ask?
No, There is no cure but treatments such as bone marrow transplantation and/or enzyme replacement therapy (ERT) can help make MPS I a more manageable disease. On April 30, 2003, the U.S. Food and Drug Administration (FDA) granted marketing approval for the orphan drug Aldurazyme (laronidase). Aldurazyme is the first and only FDA approved ERT treatment developed through recombinant DNA technology for individuals with MPS I. For more information, visit the treatment website at http://www.aldurazyme.com.
This disorder is brutal and there is only one thing we can do as parents and that is to keep on top of hospital visit's, surgeries and anything that is going to help give her the best quality of life.
We made the gofundme to help with medical needs for our daughter aleyah about a year and a half ago. We have used it for testing, and other cost through out her journey so far.
Financially we have been able to due what we can. But times tend to get tough. Any donations raised are put into an account that is used for Aleyahs medical bills, needs for the hospital trips, and for the times that my husband has to take time from work that isn't paid to be home to help take care of aleyah. Sometimes its just a few days but sometimes her recoveries are alot longer.
IF you can help in any way please do so. If you would like to send donations through mail please send me an email at [email redacted] and I will give you our address or a pay pal account number. Thanks for all the support we have gotten with everything we have needed so far. But this is something that we will continue to need as aleyah grows and new things pop up.
For more information on hurler syndrome please visit.
https://www.nlm.nih.gov/medlineplus/ency/article/001204.htm
Please feel free to Follow aleyah's page at
https://www.facebook.com/RaisingAleyah
Organizer
Charity Smith
Organizer
Plainwell, MI