Because he is a special boy. Any kid that goes though transplant and chemo is a
patient that counts. Ivan has a great heart even though he was dealt a bad hand
he still gets up ever morning with a smile on his face. That is why he counts.
Favorite Hobbies:
Ivan loves to play Basketball, play with blocks and he loves draw.
Proudest Accomplishment:
Ivan's proudest accomplishment is going though chemo and a transplant. Being only
one year's old and going though all that is a big accomplishment. Ivan is my Hero.
MPS Heroes:
Ivan's hero would be Dr. Suhag Parikh, MD. He has taken such good care of Ivan.
He not only cares about Ivan but about our whole family, he always makes sure we
are all doing well. Ivan loves his doctor and the staff at Duke Hospital.
Words of Wisdom:
The one advice I have for other families is to make sure that they have the support
not only of there family but also of there community. Because when you the this
process it will not only drain you financial but also emotional. Having people around
helps a lot.
Personal Diagnosis Experience:
Ivan was always a little guy. Being born 3 weeks early and just weighing in at 5
lbs and 5 ounces. So far it has been a difficult first year of his life. From having
a hernia at two months old to always having difficulties achieving his growth milestones.
He basically can't do what a normal child his age can do. At his 12 month visit,
his doctor had concerns over the long delays Ivan was having. Because of that she recommended us to go to see a geneticist so he could get evaluated to see what was
causing the delays. After thorough examinations, the geneticist thought of him having
a condition that was causing him to have these delays. The geneticist then sent
Ivan get blood work and a full skeletal exam done. A few days after we found out
that he was having slight changes to his spine and his hands. With just that he
suspected Ivan of having the disease he has. We just needed to wait a few more days
for the blood work results in order to fully diagnose him. Then on the 14th of October
we got the news of the blood work missing the enzyme he needs leading to the diagnosis of MPS I.
