Support Sonny and Family for Hand Surgery
Donation protected
We are excited to announce the time has come for Sonny to receive his first hand surgery on Friday, November 12th up at Boston Children's Hospital!
Sonny was born with syndactyl or joined/fused together fingers (and toes) as a result of Apert Syndrome. Sonny's thumb was born already separated so his hand resembles a "mitten". Both of Sonny's hands will require a two-part surgery in order to separate his joined fingers to provide his hands with much higher functionality into adulthood. This surgery will release the pinky and index finger away from his middle two fingers on both hands. The doctor will graft the skin from his low belly to fill in on the sides of his fingers. The second surgery will be performed 3-6 months later and will release the middle and ring finger giving him all 4 fingers! The timing of this is so he gets used to his new hands in preparation to begin Kindergarten in a couple of years!
If you recall, we had a remarkable Charlotte-based Craniofacial plastic surgeon perform Sonny's skull surgery at Levine Children's Hospital back in March 2020. Fortunately, we have been led to finding the equivalent expert in pediatric plastic hand surgery with Dr. Brian Labow at Boston Children's Hospital. Dr. Labow specializes in releasing Apert syndrome hands and will be conducting Sonny's hand surgeries and hand care into adulthood at BCH.
Info on Dr. Labow/BCH and Apert Syndrome:
https://www.childrenshospital.org/directory/physicians/l/brian-labow
Sonny and I will fly up to Boston on Tuesday, November 9th, we have pre-op appointments on Wed and Thursday. Josh will join us on Thursday afternoon. Sonny undergoes surgery on Friday, November 12 (time TBA), and will stay in the ICU for 1-2 nights. We will remain in Boston until Nov 16 for post-op follow-up. Sonny will be cast on both arms from his fingertips to his bicep for 3 full weeks. Sonny's local Orthopedic doctor will have check-ins throughout the 3 weeks and will remove his casts. Sonny should have his first round of new hands just in time for his birthday on December 10th!
Sonny was born with syndactyl or joined/fused together fingers (and toes) as a result of Apert Syndrome. Sonny's thumb was born already separated so his hand resembles a "mitten". Both of Sonny's hands will require a two-part surgery in order to separate his joined fingers to provide his hands with much higher functionality into adulthood. This surgery will release the pinky and index finger away from his middle two fingers on both hands. The doctor will graft the skin from his low belly to fill in on the sides of his fingers. The second surgery will be performed 3-6 months later and will release the middle and ring finger giving him all 4 fingers! The timing of this is so he gets used to his new hands in preparation to begin Kindergarten in a couple of years!
If you recall, we had a remarkable Charlotte-based Craniofacial plastic surgeon perform Sonny's skull surgery at Levine Children's Hospital back in March 2020. Fortunately, we have been led to finding the equivalent expert in pediatric plastic hand surgery with Dr. Brian Labow at Boston Children's Hospital. Dr. Labow specializes in releasing Apert syndrome hands and will be conducting Sonny's hand surgeries and hand care into adulthood at BCH.
Info on Dr. Labow/BCH and Apert Syndrome:
https://www.childrenshospital.org/directory/physicians/l/brian-labow
Sonny and I will fly up to Boston on Tuesday, November 9th, we have pre-op appointments on Wed and Thursday. Josh will join us on Thursday afternoon. Sonny undergoes surgery on Friday, November 12 (time TBA), and will stay in the ICU for 1-2 nights. We will remain in Boston until Nov 16 for post-op follow-up. Sonny will be cast on both arms from his fingertips to his bicep for 3 full weeks. Sonny's local Orthopedic doctor will have check-ins throughout the 3 weeks and will remove his casts. Sonny should have his first round of new hands just in time for his birthday on December 10th!
With all this said, we are graciously asking for assistance with the expenses for airline tickets, lodging, transportation, food, childcare for Maddie who will remain in Charlotte during this time, post-care assistance and therapies, and time off of work.
Please feel free to follow our Sonny surgery updates more closely here:
https://www.caringbridge.org/visit/sonnydaniel
Please feel free to follow our Sonny surgery updates more closely here:
https://www.caringbridge.org/visit/sonnydaniel
Background on Sonny:
At birth, Sonny was diagnosed with a rare genetic syndrome called Apert Syndrome. About 1 in 60-80,000 babies are born with Apert Syndrome. Like any syndrome, there is a spectrum of severity, development, and characteristics. As Sonny has grown and developed, we can now see he is on the lesser end of the severe spectrum, but he possesses some of the more major characteristics that require multiple surgeries over the years.
- Craniosynostosis: A condition in which the fibrous joints, called sutures, between the bones of the skull fuse too early during a child’s development, changing the shape of the head and potentially increasing pressure on the brain.
- Midfacial hypoplasia: Decreased growth of the central face. This causes a sunken facial appearance and may cause difficulty breathing, called sleep apnea
- Syndactyly: Fusion of the fingers and/or toes.
We thank you in advance for reading about our journey and helping in any way you can to support our family in our travel and recovery.
With Love and Gratitude,
Kellie, Josh, Maddie & Sonny Daniel
Organizer
Kellie Daniel
Organizer
Charlotte, NC