hard to survive that he is the oldest child to ever live this long through the disease.
Unfortunately, Tyler will not be medically cleared to return home anytime soon. He is not a candidate for a rehabilitation facility anymore which was the hope for our family and his loving dedicated school-based team.
The Boston Children’s team has shifted the families thought process to quality of life decisions. Tyler is not able to walk safety anymore, lost almost all of his speech, has difficulties with swallowing along with urinating and suffers through uncontrollable body jerks and restlessness. Tyler no longer showers, dresses, rarely leaves his hospital bed or eats without support.
My sister and brother in-law have worked tirelessly to meet all of Tyler's medical needs and bring awareness to rare diseases. They have worked to research all medical options to prolong his life and starve off the progression of his disease which we know now is not possible. Tyler’s parents also have generous hearts and have fund-raised for various organizations over the years that have helped them in some way. Tyler’s extended family helps as much as possible; however, we also see firsthand the costs related to having a child with a serious medical condition.
Due to Tyler’s long-term hospitalization my sister had to take a leave of absence from her
job to care for him. She is already docked pay each day she is out of work and in a couple weeks will most likely not be paid at all. Kelly and Steve also know Tyler will live a much shorter life than was already expected and spending time with him is all that matters. Our ultimate family goal would be to allow Kelly to take the rest of this school year off to be with Tyler.
This is an unspeakable trauma for our family and to watch our nephew suffer through the progression of his disease has broken our hearts. Tyler needs his family by his side through this unimaginable journey of suffering. Costs associated with this devastating disease continue to mount out of control and is no doubt adding to the stress of the family.
We are asking for everyone to consider helping Ty-man’s Journey. We need to ease the burden in some way. The family continues to be grateful for all the support they have already received and for their close friends who have held their hands through this difficult time.
It’s heartbreaking to know how little can be done for my nephew. Anyone that knows Tyler, would say he is the sweetest and most loving young man around. I hope you will join my campaign and wear stripes on Rare Disease Day which is February 28th. These children and families need our support to bring awareness to diseases with no treatment or cures.
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