My son Mick is eleven years old. He is a triplet. For most of his life we and his physicians have been trying to find a diagnosis for our son. At the age of 2 he was able to walk and talk. After a common cold, my son began to lose skills. He went from walking to crawling and now is wheel-chair bound. In addition to his mobility issues, he also has numerous neurological, pulmonary and gastrointestinal problems. He has been seen and evaluated by the top doctors at Johns Hopkins Hospital and still we do not have a diagnosis or treatment. As each year goes by he gets progressively worse.
Within the past 5 years a test has been developed called Whole Exome Sequencing. This test can be very useful in diagnosing previously undiagnosed patients. According to the New England Journal of Medicine researchers at Baylor College of Medicine in Houston, Texas were able to diagnose 25% of 250 previously undiagnosed patients with suspected genetic disorders. The physicians and geneticists that work with my son tell us this is our best chance at finding a diagnosis and possibly a treatment.
Since our health insurance had denied the coverage for this test we were desperate to raise money to cover the costs on our own. Our community, family, friends, co-workers and complete strangers reached out to us and hosted a fund-raiser and we were able to cover the cost of this exspensive test. We are now waiting for the results. My son has been hospitalized three times this past year. We are asking for your help, so that my son has a fighting chance to find a diagnosis for this disorder, and hopefully a plan of treatment. Many people have reached out to us already, and I can't thank them enough.
In addition to helping us with my son's medical exspenses, your generosity will outfit our family's life with a means to include Mick ALL of the time! It will help us with the simple things that you and I take for granted, such as getting in and out of bed (purchase of a hospital bed) or simply taking a bath (modifying our bathroom to fit my son's wheel-chair).
Also, PLEASE keep spreading the word to raise awareness. My son is one of many, who are undiagnosed and fight every day for a good quality of life. No child should bare such pain. No family should endure the pain of not knowing how to fight....not knowing what the future holds for your child.
So many people have sacraficed time, money, physical and emotional states to be by our side and fight our fight. Thank you for your continued help!! You all are our lifeline. There are not enough words to describe how humbled we are knowing that people who don't even know my son, give to help others. You ARE helping my son!!
This has been a long, emotional process and we feel blessed that so many people want to help. We really appreciate someome we have never met having such a big heart!
With Love, The Smith Family
"Those who make compassion an essential part of their lives find the joy of life. Kindness deepens the spirit and produces rewards that cannot be completely explained in words. It is an experience more powerful than words. To become acquainted with kindness one must be prepared to learn new things and feel new feelings. Kindness is more than a philosophy of the mind. It is a philosophy of the spirit."
Robert J. Furey
DonationsSee top donations
- Kelly Kotche
- Jacqui Mayton
- DoDah Smith
- Brian Dougherty
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more