noah
“This has been an eventful season of life,
but by God’s grace we are ready to tackle
anything that comes our way!”
Stories of Hope
We would like for you to meet our little Noah. He is very special to us! He’s not
special because he has an odd syndrome with a funny name, but because God has
blessed us with him. He has been such a blessing to our family. He has touched people
with his smile that we would have never met if it wasn’t for him!
Noah was born in 2007 in a little town called Powell, Wyoming. We thought he
had severe bruising when he was born, only to find out around a week later that it was
a port wine stain birthmark. We also noticed a “bulging-cloud covered” eye which we
dismissed at first thinking something happened during his birth. Around 1 week old, I
told the local doctor about his eye. He did not see what I saw but said he wasn’t an
eye expert and sent us to his local optometrist. It was there when we first heard the
term Sturge-Weber syndrome, PWS birthmark, and glaucoma. He sent us to Billings,
MT to confirm it and they did. Since Noah was so tiny, the doctor in Billings wasn’t
really equipped to give him the medical attention he needed so they sent us to Primary
Children’s Hospital in Salt Lake City, UT. It was ironic to me, that just days earlier, I was
commenting to the local doctor of how busy I was feeling. I was bringing him to the
hospital daily for jaundice and I told him I didn’t know how parents with bigger medical
issues could keep up! Before I knew it, I felt like we were in a whirlwind of seeing
specialists when all I wanted to do was hold my baby at home. Our family of four other
children was heading to Utah (500 mile one-way trip) every two weeks for his eye for
about the first four months of life. Although Noah has not had any seizures, he has had
four eye surgeries before 14 months old and it looks like he will have another one in the
near future. At one time he was on seventeen eye drops a day! His vision in one eye is
extremely poor.
We’ve been through numerous laser treatments on the extensive PWS which covers
most of the face, scalp, chest, back, arm, hand, backs of both legs, and bottoms of
both feet. He’s been blessed with a lighter colored birth mark (unless he gets cold, then
it turns deep purple). Most people think it’s a rash or an allergic reaction, a wind or
sunburn, or they suggest a cream…hehe. This has been an eventful season of life, but
by God’s grace we are ready to tackle anything that comes our way!
There are two things I remember, just like it was yesterday. 1.) When I read about
Sturge-Weber my mind filled with fear. My parents just happened to be visiting the
new baby and my mom took me into the bedroom and prayed while I cried. I believe
that God has touched Noah because of prayer. 2.) When I was trying to figure out if
Noah truly had Sturge-Weber, I had emailed Anne Howard, from the Sturge-Weber
Foundation, some pictures of Noah’s birthmark. I had asked her if she felt it was really
a PWS birthmark…her first response was “Congratulations, you have a beautiful baby.”
Thank you!
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