My brother and his wife recently had their third child who has been diagnosed with Spondyloepiphyseal Dysplasia Congenita (SEDc
Dysplasia). At their 20 week appointment they found out they were having their first boy... and that he most likely wasn't going to live. Each appointment after that the many doctors repeated their prediction of his death, and recommended they terminate the pregnancy. But my sister in law refused and carried him until he came a month early.
SEDc Dysplasia is a type of dwarfism so rare that they don't have a set incident number for it. He's had a very rocky start, but is a strong little warrior that is continually proving every doctor wrong. They anticipate he will have months in the NICU and will have special needs his entire life - but he's alive and thriving!
On top of all this, they have two little girls that they work so hard to take care of everyday and put on a brave face just for them. They also live over an hour away from the hospital, but still make the journey daily to spend as much time as they can with him.
(at 1 month of age)
An average 1 week stay in the NICU is $50,000. Doctors predict he will spend his 1st birthday in the hospital.
I'm hoping by reaching out to the community we can provide them with some financial relief to ease the stress of the medical bills that are quickly pilling up. Let's show them love and support so they know they are not alone. Anything helps! Thank you!
Read more about his battle here:
- Cindy Woodruff
- Becki Edwards
- Luann Gwaltney
- Anna Wright
- Jennifer Van Berckelaer
Organizer and beneficiary
South Jordan, UT