Pippa's Ride: Save Megan's back!
Donation protected
Please help Pippa & Megan obtain a wheelchair-accessible van!
Pippa is a fierce little girl who has been overcoming obstacles since the very moment she was born. At birth, Pippa suffered an Intraventricular Hemorrhage - a serious, life-changing injury to her brain. As Pippa grew, the impact upon her development became more apparent, and she was diagnosed with cerebral palsy and a visual processing disorder. Shortly after, Pippa began having frequent seizures and was identified as having a severe and rare form of epilepsy called Lennox-Gastaut Syndrome. This disorder is characterized by seizures that are resistant to medical treatment, and Pippa’s epilepsy has proven to be extremely challenging to remedy. At the age of 11, Pippa has already been through what most of us would consider to be a relentless medical marathon: eleven different drugs trialed with no success, two failed VNS device implantations, and a brain surgery that was minimally successful. Pippa is currently testing another pharmaceutical drug that as of yet, appears to be equally ineffective at controlling her painful and frequent seizures.
Due to her brain injury and the resulting diagnoses, Pippa is unable to walk or even bear weight. She underwent an extensive hip surgery four years ago, with her pelvis cut and reshaped to accommodate the need for her legs to be straightened. This has allowed Pippa to sit safely in her wheelchair, as her legs were beginning to dislocate from her hip sockets - an unfortunate side effect of her inability to stand. As one might imagine, the recovery from this needed surgery was excruciating.
Pippa is entirely dependent upon her parents, but especially her mother, Megan, for every bit of her care and safety. Given her severely limited movement, Pippa must be catheterized every three hours. Megan is anticipating that Pippa will require two more surgeries this year due to the impact of immobility on her bladder and bowels. When out of the home, it is impossible to find an adequate place to change a pre-teen who is unable to bear any of her own weight.
For eleven years, Megan has lifted Pippa multiple times a day, in and out of bed, in and out of the bath, onto and off the sofa - and most laboriously, in and out of the car. Pippa has grown to 90lbs of strength and beauty! But 90lbs is a lot for anyone to lift multiple times a day. Megan is petite in stature, and it is a tremendous struggle for her to continuously meet the physical demands required to leave the house on a daily basis with her daughter. Many of us take for granted the ease of running errands, dashing into stores and hopping in and out of the car. Megan has to carefully plan every errand, anticipating the toll it will take on her body.
Megan has been a heroic mother in caring for her beloved daughter, facing every challenge and making tremendous sacrifices along the way. Her own physical health has deteriorated significantly. Megan lives with chronic, debilitating, continuous pain - a frozen shoulder, as well as arm, neck and back misery. Due to all the lifting required in transporting Pippa, Megan has had two hernia surgeries and is due for a third. Pippa’s father, Kevin, has had a hernia repair surgery as well for the same reasons.
The medical impact on Megan is not only physical pain; the emotional strain of unrelenting stress has taken a devastating toll on Megan’s overall health. She has fibromyalgia, Hashimoto’s Thyroiditis, and psoriasis. This means she lives with a baseline of discomfort and fatigue - yet she manages to soldier through taking care of Pippa’s extraordinary needs alongside all the daily demands of life with two kids and a household to run. Sleep is at a premium, as Pippa’s rest is often compromised with her extensive seizure activity and Megan is needed for comfort at all hours. Megan is on an extensive regimen of medications, pain-relieving lotions, muscle relaxers and prescription anti-inflammatories, just to get through each day. She visits a chiropractor twice a month, has utilized acupuncture and massage therapy - still, her body is so worn from the daily lifting requirements.
There are many invisible expenses that come with a child who has vastly complex medical needs. Frequent doctor and specialist co-pays, the exorbitant medication costs and therapeutic devices that aren’t covered by insurance - even the cost of adult diapers that Pippa must wear, and the extensive gas mileage involved with frequent doctor visits and hospital stays. Another often overlooked financial sacrifice is the forfeiting of full-time income by the primary caregiver. Megan has tried several times to maintain a consistent work life, but there is only so much an employer can tolerate when Pippa’s medical needs require Megan to be available frequently. Kevin’s role is vital as the family’s sole source of income, and he tolerates a long commute every single workday to support his family. Because Kevin is able to provide for the majority of health and therapeutic needs for Pippa, her family does not meet income requirements for programs that offer help to obtain larger accessibility needs.
For the entirety of Pippa’s life, the Hull family has accepted the limitations of non-adapted vehicles - having to remove her from the wheelchair, settle her into the car, fold the wheelchair up, put it in the trunk - and then do it all in reverse once they arrive to their destinations. This was easier to do when Pippa was young, but it’s simply no longer possible to continue on as they have. While the need to purchase a wheelchair-accessible van is tremendous, the financial component is overwhelming. A van of this nature is $70k. Pippa’s parents are hopeful that the van they purchase will last a very long time, because Pippa will need one for the rest of her life.
The family has given thoughtful consideration to what kind of van would be most beneficial for Pippa’s needs. A side-entry van with a raised roof or lowered floor is extremely important - Pippa will always need a caregiver to wheel her into the van and strap her chair in safely, so this extra headspace would allow for that. It would also permit her to remain in the wheelchair during transport, providing her with appropriate support to sit safely, and saving her the strain of being lifted. Additionally, with Pippa’s diapering needs, a side-entry van would allow Megan to change her in the backseat when the family is away from home. It also would provide seating for additional family members to ride along.
A wheelchair-accessible van will be life-changing for the Hull family, but especially for Megan and Pippa. It has become very isolating to be limited by their current vehicles. Megan is existing in a state of constant injury from the strain of lifting Pippa, and she has to be very judicious in determining how many times in one day she can do so. Between school and doctor appointments, there is very little energy left for social outings, and errands are exhausting (especially if they discover too late that a store is not wheelchair accessible). Pippa loves to be out and about in the community, enjoying people and the sights around her. There is an accessible playground nearby that Pippa would love to visit more often. It would be such a dream for the family to only have to wheel her into the van, and then simply have to wheel her out of the van to go play! When life is already very challenging on a good day, the inability to take a break from the isolation on a hard day is so defeating. A wheelchair-accessible van would give both Pippa and Megan a new freedom to live their best life.
On behalf of the Hull family, I ask anyone who is moved to contribute toward the purchase of a wheelchair-accessible van to please do so. Every contribution will be joyfully and gratefully welcomed. The need to purchase a wheelchair-accessible van is urgent. This family has a tremendous resilience that I admire so much - despite the weight of their challenges and the interminable nature of their sufferings, Megan and Kevin remain bright lights of humor, generosity and kindness to others. And mighty Pippa is a mirror of her parents - she maintains a joyful spirit (and a love for funny cat videos), despite a life that is harder than most of us could ever imagine.
Please donate and share this as often as you can!
Pippa is a fierce little girl who has been overcoming obstacles since the very moment she was born. At birth, Pippa suffered an Intraventricular Hemorrhage - a serious, life-changing injury to her brain. As Pippa grew, the impact upon her development became more apparent, and she was diagnosed with cerebral palsy and a visual processing disorder. Shortly after, Pippa began having frequent seizures and was identified as having a severe and rare form of epilepsy called Lennox-Gastaut Syndrome. This disorder is characterized by seizures that are resistant to medical treatment, and Pippa’s epilepsy has proven to be extremely challenging to remedy. At the age of 11, Pippa has already been through what most of us would consider to be a relentless medical marathon: eleven different drugs trialed with no success, two failed VNS device implantations, and a brain surgery that was minimally successful. Pippa is currently testing another pharmaceutical drug that as of yet, appears to be equally ineffective at controlling her painful and frequent seizures.
Due to her brain injury and the resulting diagnoses, Pippa is unable to walk or even bear weight. She underwent an extensive hip surgery four years ago, with her pelvis cut and reshaped to accommodate the need for her legs to be straightened. This has allowed Pippa to sit safely in her wheelchair, as her legs were beginning to dislocate from her hip sockets - an unfortunate side effect of her inability to stand. As one might imagine, the recovery from this needed surgery was excruciating.
Pippa is entirely dependent upon her parents, but especially her mother, Megan, for every bit of her care and safety. Given her severely limited movement, Pippa must be catheterized every three hours. Megan is anticipating that Pippa will require two more surgeries this year due to the impact of immobility on her bladder and bowels. When out of the home, it is impossible to find an adequate place to change a pre-teen who is unable to bear any of her own weight.
For eleven years, Megan has lifted Pippa multiple times a day, in and out of bed, in and out of the bath, onto and off the sofa - and most laboriously, in and out of the car. Pippa has grown to 90lbs of strength and beauty! But 90lbs is a lot for anyone to lift multiple times a day. Megan is petite in stature, and it is a tremendous struggle for her to continuously meet the physical demands required to leave the house on a daily basis with her daughter. Many of us take for granted the ease of running errands, dashing into stores and hopping in and out of the car. Megan has to carefully plan every errand, anticipating the toll it will take on her body.
Megan has been a heroic mother in caring for her beloved daughter, facing every challenge and making tremendous sacrifices along the way. Her own physical health has deteriorated significantly. Megan lives with chronic, debilitating, continuous pain - a frozen shoulder, as well as arm, neck and back misery. Due to all the lifting required in transporting Pippa, Megan has had two hernia surgeries and is due for a third. Pippa’s father, Kevin, has had a hernia repair surgery as well for the same reasons.
The medical impact on Megan is not only physical pain; the emotional strain of unrelenting stress has taken a devastating toll on Megan’s overall health. She has fibromyalgia, Hashimoto’s Thyroiditis, and psoriasis. This means she lives with a baseline of discomfort and fatigue - yet she manages to soldier through taking care of Pippa’s extraordinary needs alongside all the daily demands of life with two kids and a household to run. Sleep is at a premium, as Pippa’s rest is often compromised with her extensive seizure activity and Megan is needed for comfort at all hours. Megan is on an extensive regimen of medications, pain-relieving lotions, muscle relaxers and prescription anti-inflammatories, just to get through each day. She visits a chiropractor twice a month, has utilized acupuncture and massage therapy - still, her body is so worn from the daily lifting requirements.
There are many invisible expenses that come with a child who has vastly complex medical needs. Frequent doctor and specialist co-pays, the exorbitant medication costs and therapeutic devices that aren’t covered by insurance - even the cost of adult diapers that Pippa must wear, and the extensive gas mileage involved with frequent doctor visits and hospital stays. Another often overlooked financial sacrifice is the forfeiting of full-time income by the primary caregiver. Megan has tried several times to maintain a consistent work life, but there is only so much an employer can tolerate when Pippa’s medical needs require Megan to be available frequently. Kevin’s role is vital as the family’s sole source of income, and he tolerates a long commute every single workday to support his family. Because Kevin is able to provide for the majority of health and therapeutic needs for Pippa, her family does not meet income requirements for programs that offer help to obtain larger accessibility needs.
For the entirety of Pippa’s life, the Hull family has accepted the limitations of non-adapted vehicles - having to remove her from the wheelchair, settle her into the car, fold the wheelchair up, put it in the trunk - and then do it all in reverse once they arrive to their destinations. This was easier to do when Pippa was young, but it’s simply no longer possible to continue on as they have. While the need to purchase a wheelchair-accessible van is tremendous, the financial component is overwhelming. A van of this nature is $70k. Pippa’s parents are hopeful that the van they purchase will last a very long time, because Pippa will need one for the rest of her life.
The family has given thoughtful consideration to what kind of van would be most beneficial for Pippa’s needs. A side-entry van with a raised roof or lowered floor is extremely important - Pippa will always need a caregiver to wheel her into the van and strap her chair in safely, so this extra headspace would allow for that. It would also permit her to remain in the wheelchair during transport, providing her with appropriate support to sit safely, and saving her the strain of being lifted. Additionally, with Pippa’s diapering needs, a side-entry van would allow Megan to change her in the backseat when the family is away from home. It also would provide seating for additional family members to ride along.
A wheelchair-accessible van will be life-changing for the Hull family, but especially for Megan and Pippa. It has become very isolating to be limited by their current vehicles. Megan is existing in a state of constant injury from the strain of lifting Pippa, and she has to be very judicious in determining how many times in one day she can do so. Between school and doctor appointments, there is very little energy left for social outings, and errands are exhausting (especially if they discover too late that a store is not wheelchair accessible). Pippa loves to be out and about in the community, enjoying people and the sights around her. There is an accessible playground nearby that Pippa would love to visit more often. It would be such a dream for the family to only have to wheel her into the van, and then simply have to wheel her out of the van to go play! When life is already very challenging on a good day, the inability to take a break from the isolation on a hard day is so defeating. A wheelchair-accessible van would give both Pippa and Megan a new freedom to live their best life.
On behalf of the Hull family, I ask anyone who is moved to contribute toward the purchase of a wheelchair-accessible van to please do so. Every contribution will be joyfully and gratefully welcomed. The need to purchase a wheelchair-accessible van is urgent. This family has a tremendous resilience that I admire so much - despite the weight of their challenges and the interminable nature of their sufferings, Megan and Kevin remain bright lights of humor, generosity and kindness to others. And mighty Pippa is a mirror of her parents - she maintains a joyful spirit (and a love for funny cat videos), despite a life that is harder than most of us could ever imagine.
Please donate and share this as often as you can!
Organizer and beneficiary
Abby Benedict
Organizer
Parkville, MO
Megan Alethea Brown Hull
Beneficiary