Bless Jonah with SIGHT

Jonah was diagnosed with a rare genetic syndrome called Blepharophimosis Ptosis Epicanthus Inversus Syndrome (BPES).

In summary, Jonah’s eyelid muscles do not function as the everyday person. They are surrounded by fatty tissue causing them not to work. His eyelids themselves are also a lot smaller than normal, he does not have an eyelid crease, he has a shallow bridge of his nose, wide set eyes and his eyelids are shaped very differently. Because of these differences Jonah is unable to open his eyes much more than a sliver. He has learned to open them a bit more by raising his eyebrow muscles to lift his eyelids.

It’s CRUCIAL for him to get light in his eyes so his brain can make the connection to vision, THE LONGER WE WAIT FOR SURGERY THE MORE AT RISK HE IS FOR VISION LOSS. This condition does not affect his mental development which we praise the Lord for.

Because this condition is so rare , there are only a few pediatric  oculoplastic surgeons in the US who specialize in doing his surgery. Each surgeon who specializes in this condition have a different technique they like to use and believe in. This has been challenging for Jonah's parents, having to decide which technique they feel the most comfortable with. They are in the process of deciding between a surgeon in New York, Philadelphia and Michigan.

Jonah and his parents will have lots of expenses coming up. They are hoping and praying that their new insurance will cover most of the surgery itself, but it will not cover airfare, hotel stays and travel expenses involved in getting there. They will have to fly out multiple times as Jonah will need consultations first before surgery can move forward. They are hoping to have his surgery scheduled by April for May or June.

From Jonah's mom, Tiffany: This journey has been extremely challenging. We have had to play doctor as no one knows exactly where to send us and there is limited research on BPES. We believe in the power of prayer overall. We ask for prayers for direction to find the right surgeon for our sweet Jonah. We pray his vision is preserved and none is hindered. We ask for prayers for our family as this has been a very hard time of walking by faith and trusting God has Jonah in his hands. If you feel led to help us financially, even the littlest amount is more than we had before and is appreciated IMMENSELY. Above all, we trust in our Lord Jesus Christ that he will provide exactly what we need. Jonah is the light of our lives, he has brought so much love and joy into our family and to everyone he meets. We know that God has made Jonah extra special for a very specific reason and we are so excited to watch his life unfold and shine the glory of Jesus.

Please consider blessing Jonah, his parents Aaron and Tiffany, and big sister Eden.