Emily is our amazing wee angel who needs your help.
On the 5th May 2018 Emily entered this world and has been smiling ever since.
However, Emily was born with a rare disease, so rare that in some years not even one person is born with TAR Syndrome in Northern Ireland.
Emily has undergone rigorous tests and continuous hospital appointments to which she was diagnosed with TAR Syndrome.
This means Emily is missing her radius bone in both forearms therefore Emily has clubbed hands, curved ulna bone in her forearms and a low palette count.
Following our own research, we found Dr Paley, from Florida, USA. Through his years of experience dealing with rare diseases and through seeing so many cases of TAR Syndrome for all around the world, Dr Paley then developed his own procedure, called Ulnarization. This means he is able to utilise the bone Emily does have to the best of its ability. Improving mobility, strength, growth and will give Emily as close to normal hand and wrist function as possible.
From this, we began our fundraising journey for #TeamEmily as this life changing procedure costs $120,000.00.
Without this operation, Emily will struggle with the simple, daily tasks throughout her life, which we all would take for granted... crawling, drawing, writing, eating... you think of what you do your arms and wrists, then Emily will struggle with.
Now, please don’t think we haven’t exhausted all avenues for Emily, as we have. Following meeting with numerous doctors and specialists within the NHS, we have been informed the only possible procedure they would consider Emily for does not have good outcome... 75% recurrence, greatly reduce the minimal growth possibilities in both arms, high risk of wrist stiffness (therefore further restricting any movement Emily currently has).
With all this in mind, I hope you can see why we need your help to provide Emily with the life changing operation in America.
#TeamEmily
#HelpFixMyArms
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