Tony, our 9 year old son, is the kind of kid that has never let his disability frame who he is. He amazes us every day with his beautiful spirit and determination.
We were so excited to hear that he wanted to play baseball and take Karate this year and we are so proud of how much work and heart he has put into these sports. See, for most parents, having their child play baseball, take Karate or some other sport is a normal milestone but for Tony these are ones we were not sure we would ever see.
Tony was born with bilateral clubbed feet and, unfortunately, his problems didn’t stop there otherwise we wouldn’t be here today looking for a diagnosis. As Tony got older it became more and more apparent that we were dealing with something much bigger. He lost muscle tone in his calves and can’t lift his feet when walking which causes him to have a gait called “foot drop”. This of course makes running incredibly difficult along with many other physical activities we all take for granted.
Tony has seen multiple doctors and has undergone many diagnostic and genetic tests yet we still have no answers. We feel so fortunate that the problems Tony faces are relatively minor. However, without a diagnosis we cannot promise our son that things will get easier for him. The future of his disease is a mystery but we are hopeful that soon we will find the answers we seek. The genetic sequencing testing that Tony needs starts at the cost of $7,500.00 that is why we are asking for donations today!! Every PENNY gets Tony one step closer to a diagnosis!!
The Reyes and Lavon Families!!!
Hello. My name is Sheena.
My whole life, I have been labelled a medical mystery. From birth, doctors have been trying to figure out the underlying cause for what is going on with my body.
Multiple organ systems are involved --I was born with GI tract motility issues, balance issues when walking, autism, hypermobility in my joints, and speech issues.
Over time, as I have grown up, I have had more body systems become involved and new symptoms--migraines, heat/cold intolerance, near-fainting episodes, widespread pain, crushing fatigue, cognitive difficulties, seizure activity --and have been diagnosed with Ehlers Danlos Syndrome, Neurocardiogenic Syncope, IBS-C, fibromyalgia, and many other labels.
As my illness has progressed, I went from being able to go to school and work full-time (I graduated with my Bachelor's degree in Animal Science in 2009 and attempted graduate school before having to stop due to progression) to struggling to work 10 hours a week. I miss being able to volunteer as much as I used to. I am now a part-time wheelchair/mobility scooter user.
Doctors still have not been able to find an underlying cause. Some say I am too complex and they cannot help --and I get shuffled off to another doctor.
Several doctors suspect that I have a form of mitochondrial disease, but needed genetic testing has been out of reach due to cost and lack of insurance coverage for it. I am hopeful that, if enough funds can be raised to cover the needed genetic testing, the underlying cause for a lifetime mystery will be found --and with it, better treatment options and a higher quality of life.
I hope to be an advocate for others with chronic illnesses and disabilities. I hope with better treatment options, that I will have more energy and ability to do more to help others