A Wheelchair Accessible Van for Marley
Donation protected
Hi friends- as many of you know, our sweet 4 year old daughter, Marley, was diagnosed with Rett Syndrome in April of 2021.
What is Rett Syndrome?
Rett Syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett Syndrome is near constant repetitive hand movements. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained. Rett Syndrome is caused by mutations on the X chromosome on a gene called MECP2. Rett syndrome can present with a wide range of disability ranging from mild to severe.
Symptoms of Rett Syndrome can include:
Currently, there is no cure, and no treatment.
How does Rett Syndrome effect Marley?
Rett Syndrome undeniably presents significant challenges, it effects every single aspect of Marley’s life, however it absolutely does not touch our Marley’s spirt. Joy radiates from her. She has an extraordinary ability to connect deeply with people, without saying a word. She is a light in this world.
She utilizes a wheelchair, a gait trainer, a feeding tube, an AAC device, positioning chairs, and various other pieces of medical equipment and aids to live her life as fully as possible. She is a complex care patient at Hershey Medical Center, and we frequently travel to Philadelphia with her to attend Rett clinics at the Children’s Hospital of Philadelphia. She also participates in physical, occupational, and speech therapy, which helps her maintain her abilities.
How this fundraiser will help Marley:
Upon receiving Marley’s diagnosis, we knew that a wheelchair accessible van was an inevitable need. Our sedan cannot accommodate all of Marley’s equipment and mobility aids at this time, and it is becoming impossible to transfer her various pieces of equipment from home to therapy, or just general outings with her family. It is also becoming much more difficult physically to transfer her from her wheelchair to her car seat as she has gotten bigger. We have recently realized that we need an accessible van much sooner than we had anticipated, given Marley’s growth, and mobility limitations. Unfortunately the cost of these vans are high, even when purchased used, typically ranging from $40,000 to $100,000. An accessible van would not only help us physically, but will also allow Marley to be significantly more comfortable in the car, and allow space for her various mobility aids, and eventually, her service dog (who will be here in the fall) to travel with her.
Why we are fundraising:
Being disabled is expensive. Having a disabled child is expensive. Between medical expenses, travel expenses, therapy equipment, communication devices, and adaptive home equipment, there is undeniable financial stress that comes with providing an entirely deserved equitable life for any disabled child. Grants can help, and we are looking into all of our options- but they take time, and will not cover the entire cost.
We are all in for her, though. We will always do everything within our means to give her everything, and when it’s outside of our means, we will find a way for her. We are grateful for any support at all. Having a wheelchair van will change Marley’s life, and we appreciate any bit of generosity that can help us reach our goal. Thank you
What is Rett Syndrome?
Rett Syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett Syndrome is near constant repetitive hand movements. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained. Rett Syndrome is caused by mutations on the X chromosome on a gene called MECP2. Rett syndrome can present with a wide range of disability ranging from mild to severe.
Symptoms of Rett Syndrome can include:
- Loss of speech
- Loss of purposeful use of hands
- Involuntary hand movements
- Loss of mobility or gait disturbances
- Loss of muscle tone
- Seizures
- Scoliosis
- Breathing issues
- GI issues
- Sleep disturbances
- Slowed rate of growth for head, feet and hands
How does Rett Syndrome effect Marley?
Rett Syndrome undeniably presents significant challenges, it effects every single aspect of Marley’s life, however it absolutely does not touch our Marley’s spirt. Joy radiates from her. She has an extraordinary ability to connect deeply with people, without saying a word. She is a light in this world.
She utilizes a wheelchair, a gait trainer, a feeding tube, an AAC device, positioning chairs, and various other pieces of medical equipment and aids to live her life as fully as possible. She is a complex care patient at Hershey Medical Center, and we frequently travel to Philadelphia with her to attend Rett clinics at the Children’s Hospital of Philadelphia. She also participates in physical, occupational, and speech therapy, which helps her maintain her abilities.
How this fundraiser will help Marley:
Upon receiving Marley’s diagnosis, we knew that a wheelchair accessible van was an inevitable need. Our sedan cannot accommodate all of Marley’s equipment and mobility aids at this time, and it is becoming impossible to transfer her various pieces of equipment from home to therapy, or just general outings with her family. It is also becoming much more difficult physically to transfer her from her wheelchair to her car seat as she has gotten bigger. We have recently realized that we need an accessible van much sooner than we had anticipated, given Marley’s growth, and mobility limitations. Unfortunately the cost of these vans are high, even when purchased used, typically ranging from $40,000 to $100,000. An accessible van would not only help us physically, but will also allow Marley to be significantly more comfortable in the car, and allow space for her various mobility aids, and eventually, her service dog (who will be here in the fall) to travel with her.
Why we are fundraising:
Being disabled is expensive. Having a disabled child is expensive. Between medical expenses, travel expenses, therapy equipment, communication devices, and adaptive home equipment, there is undeniable financial stress that comes with providing an entirely deserved equitable life for any disabled child. Grants can help, and we are looking into all of our options- but they take time, and will not cover the entire cost.
We are all in for her, though. We will always do everything within our means to give her everything, and when it’s outside of our means, we will find a way for her. We are grateful for any support at all. Having a wheelchair van will change Marley’s life, and we appreciate any bit of generosity that can help us reach our goal. Thank you
Fundraising team: Team fundraiser (2)
Shannen Whitehead
Organizer
Chambersburg, PA
Jacob Whitehead
Team member