Help for Jamie & Layla
Donation protected
The Alacan Family
Jamie and Layla are sisters who recently were diagnosed with a rare and progressive disorder called 4H Leukodystrophy.
Getting to the diagnosis was a year long journey in itself. When Jamie was 10 months old she was referred to physical therapy for delays in motor development and torticollis (head tilting to one side and rotated to the other). Though she made great strides learning to sit independently, crawl, pull to stand, and her head straightening, she continued to demonstrate ataxia (involuntary shaking). Over Christmas her parents rushed Jamie to the emergency room due to a high fever and nystagmus (Jamie’s eyes rapidly shook from side to side). Over the following 10 months Jamie was referred to specialist after specialist both in and out of state searching for answers. Jamie underwent MRI and CT scans, sleep studies, swallow studies, surgery for a G-tube placement, adding feeding therapy, occupational therapy, and finally undergoing genetic testing all the while her parents worrying and diligently working with Jamie, eager for, yet fearful of answers.
The Alacan family received Jamies 4H diagnosis in January of 2019 when she was 2 years old and quickly did everything they could to research the little that is known about this disorder and seek out the best Drs and Facilities. In April 2019 they were able to make an appointment at the children's hospital of Philadelphia's (CHOP) Leukodystrophy center and see the team of therapists and Neurologists who are working with 4H Leukodystrophy specifically. They were told at this appointment that there are only around 400 known cases of 4H leukodystrophy.
It was in Philadelphia that mom expressed early concern for Layla and her development and warning signs that she remembered seeing in Jamie as a baby such as the Ataxia and low core tone. The dr confirmed moms worries and agreed to send out for genetic testing for Layla. Their family received Laylas 4H diagnosis about a month later when Layla was just 7 months old. Layla has shown to be slightly stronger then Jamie was at her age and with the help of PT and other early intervention therapies we hope she will be able to grow and hit many developmental milestones. Every case of 4H presents differently and the family can only hope for the best possible outcome for both of their beautiful girls but it will take a lot of hard work for everyone to maintain therapy schedules, doctor appointments and procedures.
Jamie and Layla's medical history has been a financial strain after her parents have had to pay for many of their visits out of pocket. Jamie and Layla's diagnosis is so rare only 400 people have been diagnosed with this specific type of Leukodystrophy and most do not demonstrate symptoms until they’re eight to ten years of age, surviving only to their second decade. The Alacan sisters presentation is unique in that they started to present at such a young age. Throughout their medical journey multiple trips to CHOP and CHOA will be necessary to manage the changes Jamie and Layla face as well as an increasing need for medical equipment and treatment.
Jamie will be undergoing a tracheostomy surgery on October 16th 2020 and will require a 4 week hospital stay after surgery. They will also be needing home nursing care once they are home from the hospital.
We need your help to allow this beautiful family to care for and provide for their sweet girls Jamie and Layla, loving them for as long as they can. Your thoughtful and generous financial gifts are graciously appreciated! Together let’s help Jamie and Layla !
Jamie and Layla are sisters who recently were diagnosed with a rare and progressive disorder called 4H Leukodystrophy.
Getting to the diagnosis was a year long journey in itself. When Jamie was 10 months old she was referred to physical therapy for delays in motor development and torticollis (head tilting to one side and rotated to the other). Though she made great strides learning to sit independently, crawl, pull to stand, and her head straightening, she continued to demonstrate ataxia (involuntary shaking). Over Christmas her parents rushed Jamie to the emergency room due to a high fever and nystagmus (Jamie’s eyes rapidly shook from side to side). Over the following 10 months Jamie was referred to specialist after specialist both in and out of state searching for answers. Jamie underwent MRI and CT scans, sleep studies, swallow studies, surgery for a G-tube placement, adding feeding therapy, occupational therapy, and finally undergoing genetic testing all the while her parents worrying and diligently working with Jamie, eager for, yet fearful of answers.
The Alacan family received Jamies 4H diagnosis in January of 2019 when she was 2 years old and quickly did everything they could to research the little that is known about this disorder and seek out the best Drs and Facilities. In April 2019 they were able to make an appointment at the children's hospital of Philadelphia's (CHOP) Leukodystrophy center and see the team of therapists and Neurologists who are working with 4H Leukodystrophy specifically. They were told at this appointment that there are only around 400 known cases of 4H leukodystrophy.
It was in Philadelphia that mom expressed early concern for Layla and her development and warning signs that she remembered seeing in Jamie as a baby such as the Ataxia and low core tone. The dr confirmed moms worries and agreed to send out for genetic testing for Layla. Their family received Laylas 4H diagnosis about a month later when Layla was just 7 months old. Layla has shown to be slightly stronger then Jamie was at her age and with the help of PT and other early intervention therapies we hope she will be able to grow and hit many developmental milestones. Every case of 4H presents differently and the family can only hope for the best possible outcome for both of their beautiful girls but it will take a lot of hard work for everyone to maintain therapy schedules, doctor appointments and procedures.
Jamie and Layla's medical history has been a financial strain after her parents have had to pay for many of their visits out of pocket. Jamie and Layla's diagnosis is so rare only 400 people have been diagnosed with this specific type of Leukodystrophy and most do not demonstrate symptoms until they’re eight to ten years of age, surviving only to their second decade. The Alacan sisters presentation is unique in that they started to present at such a young age. Throughout their medical journey multiple trips to CHOP and CHOA will be necessary to manage the changes Jamie and Layla face as well as an increasing need for medical equipment and treatment.
Jamie will be undergoing a tracheostomy surgery on October 16th 2020 and will require a 4 week hospital stay after surgery. They will also be needing home nursing care once they are home from the hospital.
We need your help to allow this beautiful family to care for and provide for their sweet girls Jamie and Layla, loving them for as long as they can. Your thoughtful and generous financial gifts are graciously appreciated! Together let’s help Jamie and Layla !
Organizer and beneficiary
Christine Bost
Organizer
Pooler, GA
Courtney Alacan
Beneficiary
