Hope 4 Chayton

04/16/2026

He had a great time at field of dreams yesterday with his class!

04/05/2026

Have a happy Easter Everyone

03/29/2026

03/14/2026

Chayton made us this in wood shop. They said he has been working on it since the fall.

02/28/2026

Today is Rare Disease Day!

Rare Disease Day 2026

Holoprosencephaly:

How common is this defect?

It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and of that 3%, less than 1% survive past the first six months of life. The prognosis for a child diagnosed with HPE depends on the type of HPE and the presence of associated anomalies. The most severely affected children may only live several days, months or years and the least affected may live a normal life span.

Chayton is part of that one percent. He has lobar holoprosencephaly . Even for his sub type he is rare. Not a day goes by that I don't think how lucky we are that you're still here.

Picture of Chayton on the first day we could hold him. He was 2 months old and had been in an incubator until that point 24/7 and a picture of him from a day ago

02/26/2026

02/22/2026

Did you know February 28th is Rare Disease Day? My main diagnosis of Lobar Holoprosencephaly is a rare disease and it's a big part of who I am. This week me and my family will be sharing what makes me rare. ❤️

02/15/2026

Chayton has decided he wants to try to go out the window 🤦🏽‍♀️. This is going to be a long vacation 🤣😭

02/14/2026

When your sister is just so comfy you can't resist using her as back support. 🤣🤣🤣 She was loving it ❤️

02/06/2026

Let's go Patriots! Let's Go Drake Maye! The TRUE NFLVP. I'm rocking my Maye jersey and my AFOs with the symbol. We all we got! We all we need!