"We Help Families Bounce And Not Break"

The Williams Family

Progress

14.0%

$100 of $700.88 goal completed


williamsfamily4

Our Story: Our precious baby boy Isaac joined our family via emergency c-section a week early on July 27th. At my 20 week anatomy scan during my pregnancy with him, we found out he had bilateral clubfoot, clenched fists, and a small jaw. Because of his small jaw and small airway, he has breathing problems and can't eat orally. The doctors believe he has a very very rare disorder called Freeman Sheldon Syndrome which affects his joints and muscles. After spending 3 weeks at the NICU in St. Cloud, we have been transferred to Children's Minneapolis where he has a NG tube, a tube to help him breathe, and EEG leads on his head to monitor seizure activity. He will most likely spend several more weeks there. My husband is running low on PTO, and I am a stay at home mom. Which means we are a family of four living on one income. Any help would be greatly appreciated!

Sept. 12, 2018, 6:51 p.m.

UPDATE

A lot has happened since my first post a few weeks back. Two weeks ago Isaac underwent surgery to have a feeding tube placed and a tracheostomy was done at the same time. He is recovering well, but because of the trach he will need home nursing care set up before he can leave the hospital. There is a huge home nurse shortage, and we have been warned it could take 6-9 months to find enough nurses for him to come home. He is on minimal vent support, and the doctors are hopeful he can be completely weaned off of it. In the mean time, we are working on PT and OT. We are also still in the midst of genetic testing to determine what syndrome he has. For now, its lots of trips back and forth to the cities for us! He is such a strong little boy!