Liam’s Road to Recovery
Doação protegida
In November of 2017, Rachel and Lucy welcomed their precious twin boys, Liam and Kaeleb into the world. In addition to the every day challenges that accompany caring for infant twins, Liam suffered from excessive crying, and seemed to be developmentally delayed as well as experiencing physical developments that raised concern.
When Lucy and Rachel voiced these concerns to Liam’s doctors, they were dismissed. They were told he was just a fussy baby, he was developmentally behind due to being premature, etc. Time and time again Liam’s parents brought up their concerns and were gaslighted or dismissed.
At 4 years old, Liam began regressing and was put on an autism trajectory, but Liam does not have autism. By the grace of God, during a visit with his occupational therapist, the OT noticed the shape of Liam’s forehead was irregular and indicative of medical conditions that were missed by several previous doctors. Thanks to this OT, Lucy and Rachel were finally connected with the appropriate doctors who discovered through thorough and pertinent testing that Liam has both Metopic Craniosynostosis and Trigonocephaly.
This was a huge miss by doctors who cared for Liam in infancy and toddlerhood, and the surgery is almost always performed before 2 years of age (preferably as an infant when the bones are the softest). They only operate on cases this late, when symptoms progress. Unfortunately, Liam’s symptoms have progressed quickly. He is now in constant pain, exhibits abnormal behavior, has further regressed, rarely sleeps, and nothing relieves his symptoms. Additionally, in Liam’s most recent CT scan it was discovered he has developed a cyst behind his cerebellum, which will also need to be watched and potentially operated on.
Liam is in need of a very intensive and extensive surgery with a long recovery. Lucy and Rachel will have to relocate to South Florida where Liam will have surgery at Joe DiMaggio Children’s Hospital and they will both need to take an undetermined amount of time off of work.
While Lucy and Rachel’s main concern is getting Liam the best possible care they can right now and keeping life as normal as possible for his twin brother Kaeleb, they are looking at astronomical costs related to the surgery itself in addition to the upkeep of their home in North Florida, multiple hotel stays for appointments down south, and the future extended stay in South Florida when Liam undergoes surgery with the pre-op/post op recovery care associated. They are facing much uncertainty.
If you are able to make any financial contribution (no amount is too small), please consider doing so. But most importantly, please keep Liam, his parents Rachel and Lucy, and twin brother Kaeleb in your prayers. We thank God for the OT who was placed in Liam’s path and led him to an amazing team of surgeons and we ask God to guide the surgeons and all of those who will be caring for Liam. God, please comfort Lucy and Rachel as they navigate through the unknown and lay your healing hands upon Liam.
When Lucy and Rachel voiced these concerns to Liam’s doctors, they were dismissed. They were told he was just a fussy baby, he was developmentally behind due to being premature, etc. Time and time again Liam’s parents brought up their concerns and were gaslighted or dismissed.
At 4 years old, Liam began regressing and was put on an autism trajectory, but Liam does not have autism. By the grace of God, during a visit with his occupational therapist, the OT noticed the shape of Liam’s forehead was irregular and indicative of medical conditions that were missed by several previous doctors. Thanks to this OT, Lucy and Rachel were finally connected with the appropriate doctors who discovered through thorough and pertinent testing that Liam has both Metopic Craniosynostosis and Trigonocephaly.
This was a huge miss by doctors who cared for Liam in infancy and toddlerhood, and the surgery is almost always performed before 2 years of age (preferably as an infant when the bones are the softest). They only operate on cases this late, when symptoms progress. Unfortunately, Liam’s symptoms have progressed quickly. He is now in constant pain, exhibits abnormal behavior, has further regressed, rarely sleeps, and nothing relieves his symptoms. Additionally, in Liam’s most recent CT scan it was discovered he has developed a cyst behind his cerebellum, which will also need to be watched and potentially operated on.
Liam is in need of a very intensive and extensive surgery with a long recovery. Lucy and Rachel will have to relocate to South Florida where Liam will have surgery at Joe DiMaggio Children’s Hospital and they will both need to take an undetermined amount of time off of work.
While Lucy and Rachel’s main concern is getting Liam the best possible care they can right now and keeping life as normal as possible for his twin brother Kaeleb, they are looking at astronomical costs related to the surgery itself in addition to the upkeep of their home in North Florida, multiple hotel stays for appointments down south, and the future extended stay in South Florida when Liam undergoes surgery with the pre-op/post op recovery care associated. They are facing much uncertainty.
If you are able to make any financial contribution (no amount is too small), please consider doing so. But most importantly, please keep Liam, his parents Rachel and Lucy, and twin brother Kaeleb in your prayers. We thank God for the OT who was placed in Liam’s path and led him to an amazing team of surgeons and we ask God to guide the surgeons and all of those who will be caring for Liam. God, please comfort Lucy and Rachel as they navigate through the unknown and lay your healing hands upon Liam.
Coorganizadores (2)
Laura Meehan
Organizador
Jacksonville, FL
Rachel Schreck
Beneficiário
Lucy Schreck
Coorganizador