A Mother’s Advice on Raising a Rare Disease Superhero

March 2, 2017

Noah was born with Cloves Syndrome, a rare, genetic disorder that causes certain parts of the body to grow very large and continue to grow without stopping.

Noah has bigger hands, and a leg that has so far been affected by this. He also was born with lots of lymphangiomas in his body and neck. The doctors put him on a chemo drug to help stop the growth and– Praise the Lord!– it is working!

Noah is doing great, He just recently had hand surgery. He meets with occupational and physical therapists twice a month. We know he has many more surgeries in his future, but he brightens the room with his smile and blesses everyone he meets!

Noah is 15-months-old and does everything that a normal 15-month-old would do. He loves to play outside. Right now the treatment that the doctors find most effective for children with Cloves is a chemo drug called Sirolimus. It is a chemo drug most commonly used for transplant patients. It seems to really work because doctors are seeing kids that go on this drug early don’t have as big of a growth.

My advice as a mother of a child with a rare genetic disorder is to take it all one day at a time. To love every moment. To laugh and find the humor in the tons of doctor trips and visits and enjoy meeting new people.

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