“This Friday is International Rare Disease Day. There are more than 6000 rare Diseases. The mascot for rare diseases is the zebra so on that day everyone is encouraged to wear stripes.🦓 My daughter, Cece, has one of those rare diseases.
Cece has a condition called Rhizomelic chondrodysplasia punctata type 1 (RCDP1) classic. That means she has a very rare form of Dwarfism that affects her physically and mentally. Cece is almost 14 months old and is roughly 22 inches long and just hit the 12-pound club - whoop whoop!
There are less than 200 people in the world with her type of genetic condition.
She was recently set to undergo spinal surgery because she was born with cervical stenosis but, by the power of prayer, some amazing angels up above, Cece doesn’t need spinal surgery!! You read that right, does NOT need surgery.
We got into the Ronald McDonald House of Greater Delaware in Wilmington on a Thursday night. It is right near the Alfed DuPont Nemours Children’s Hospital. The following day, a Friday, she had a sedated MRI that would tell us what type of surgery she would need. The sedation team for the MRI was outstanding. The CRNA was going above and beyond for her care. She’s a hard IV poke (which is typical for RCDP kiddos) so we hoped they might keep it in for Monday's surgery (save her some more poking) and the CRNA came to RMCH to flush it on Saturday and Sunday. We went back to see her in recovery and she was a rockstar coming out of anesthesia!! ~Let’s be real, she’s a rock star all the time.~ We left the hospital and went back to the house because we were just going to relax in the room for the next few days until Monday's surgery.
I looked at my phone and I had a missed voicemail from the neurosurgeon dept.
They said it looks like she is in recovery and the Dr. wanted to discuss the results. We went back… The Dr. came in and said, “Well, I have good news and bad news.” My heart sank, I thought for sure it was way worse than we had even thought. He took us to his computer and showed us her MRI image a few hours earlier - her spinal canal had grown on its own. He showed us the MRI from May 2024, and I wasn’t for sure what he was going to say, but I said “Wow”, I knew they looked very different. Her spinal canal tripled in size from May. She doesn’t have a compression at the C1 on her spinal cord. She has room for fluid for her spinal cord to move. He then says “She doesn’t need surgery” 😭 (tears of joy). I’m in shock. Jeremy then asked, “what is the bad news” and the Dr. says she does have spinal cord does have some scaring and there is nothing that can be done with that. He said her collar can now be used PRN – When she is at home, she’s free of it! He said he has seen 3- and 4-year-olds with RCDP to have the spinal canal grow but never at 13 months.
We were able to plan our trip home for the next day! It didn’t feel real, but hearing from the RCDP expert felt great. Being at a hospital that knows RCDP and it isn’t unheard of with their teams is a whole different feeling - I’ve also developed a love for the patient care we got in Delaware. ♥️
We also can’t thank our village back home enough for helping with the boys. They didn’t know we’d be coming home EARLY or that Cece didn’t have the surgery! Monday night they were surprised by us getting them off the bus. 💕
Low-quality photo, but a high-quality moment for this feeling. I haven’t held her without the collar since she was 10 days old. Roughly 56 weeks since I’ve held her like this.” – Cece’s Mom