Lila's Legacy
The Issue
End Age-Based Restrictions for Mobility Support & NHS Continence Care – In Memory of Lila.
Please help us make sure Lila's story leads to change.
On 31 May 2026, our beautiful daughter, Lila Maggie Dripps-Weir, died in my arms at just two years and ten months old.
Lila was not an ordinary child with ordinary needs.
She was a little girl with a rare, life-limiting metabolic condition called Pyruvate Dehydrogenase Deficiency, alongside severe hydrocephalus, epilepsy, profound developmental disabilities, blindness, deafness and significant physical disabilities.
She required constant monitoring, medication, specialist feeding, medical equipment and around-the-clock care. She could become critically unwell without warning and spent significant periods of her short life in hospital.
But Lila was so much more than her diagnoses.
She was our daughter.
She was a little sister.
She was funny, beautiful, incredibly strong and determined.
She had a smile that could light up a room.
We were told very early in her life that she might not survive infancy. She continued to surprise everyone, fighting her way through repeated periods of critical illness and giving us precious time we never thought we would have.
We would have done anything to keep her safe.
And that is why we are asking for change.
When age became a barrier to Lila's needs
As Lila grew, transporting her safely became increasingly difficult.
She was unable to sit, stand or walk independently and required specialist support.
When travelling in a conventional car seat, Lila's head could fall forward onto her chest. This created serious concerns about her airway and oxygen levels, and there were many occasions when her oxygen levels dropped and we had to stop the car and intervene.
We spent around £800 on a specialist car seat in an attempt to find a safer solution.
It only lasted around three months before her needs became even more difficult to manage.
We were subsequently advised that the safest way for Lila to travel was in a wheelchair-accessible vehicle, allowing her to remain safely positioned in her wheelchair rather than being transferred into a conventional car seat.
This wasn't about convenience.
It was about being able to take our medically fragile daughter safely to hospital, medical appointments and, when possible, simply out into the world.
But Lila was under the age required to access the mobility support we were seeking.
Despite medical evidence and supporting letters from professionals, her age remained a barrier.
And Lila didn't have time to simply wait for another birthday.
A child shouldn't have to reach a certain age before their medical needs are recognised.
Lila was living with profound and complex disabilities.
Her medical needs existed regardless of whether she was two, three or five years old.
A birthday would not have changed her physical disabilities.
It would not have changed her need for safe transportation.
It would not have changed her epilepsy, blindness, deafness, hydrocephalus or metabolic condition.
It would not have made her suddenly more medically complex.
Yet age-based eligibility rules meant that we were fighting for support while already dealing with an incredibly fragile child.
In the final weeks of Lila's life, while she was critically unwell and on life support and we knew that her time could be running out, we were still having to think about applications, forms, deadlines and whether we could access the support she needed.
Those were moments we can never get back.
We should have been making memories with our daughter.
Instead, we were fighting systems.
Continence support was another barrier
Lila also needed continence products because of her complex medical needs and at 2 years old was over 20kg.
At the time, we were told she was not eligible for NHS continence products because of her age.
This meant that we had to find and purchase the products she needed ourselves, including travelling to another town to obtain suitable supplies.
Again, this wasn't about convenience.
These were basic products required to care for a profoundly disabled child with complex medical needs.
For families already providing 24-hour care, additional financial, practical and emotional pressure can become overwhelming.
We became Lila's carers, nurses, advocates and coordinators
Because of the level of care Lila required, both of us had to leave employment and become her full-time carers.
Our lives revolved around:
feeding and tube care
medication
her ketogenic diet
monitoring her oxygen and vital signs
seizures
hospital appointments
emergency situations
specialist equipment
moving and handling
medical teams
care planning
advocating for our daughter's needs
We loved caring for Lila.
We would do it all again.
But families caring for children with profound disabilities should not have to spend their precious time fighting unnecessarily complicated systems to access support that their child's medical team has already identified as necessary.
This isn't only about Lila
Lila is the reason we started this petition.
But this petition is about the children who are still here.
Children with profound disabilities.
Children with complex medical needs.
Children with life-limiting conditions.
Children whose needs do not fit neatly inside an age threshold.
And the parents who are already doing everything they possibly can to keep their children safe.
We believe decisions about essential support should be based on the individual child's actual needs, supported by appropriate medical evidence and professional recommendations.
What we are asking for
We are calling on the UK Government, devolved administrations and relevant health and social care bodies to review age-based restrictions that can prevent children with significant disabilities and complex medical needs from accessing essential support.
We believe eligibility should take account of:
Clinical need
Functional ability
Medical evidence
Individual circumstances
Professional recommendations
The child's safety
The impact on the child and family
We are specifically asking for:
🦽 Mobility support
Age should not automatically prevent a child with significant mobility needs from being considered for appropriate mobility support where medical evidence demonstrates that it is necessary.
💜 NHS continence care
Children with genuine clinical continence needs should have access to appropriate NHS continence products based on individual assessment and clinical need, rather than being automatically excluded because they have not reached a particular age.
🩺 Individual assessment
Every child should be considered as an individual.
A child's birthday should not erase the medical evidence of what that child needs.
We know that systems have rules
We understand that public services need eligibility criteria and that resources have to be managed responsibly.
We are asking for clinical need to be properly considered when age-based rules would otherwise prevent access to support that a child genuinely and urgently requires.
There should be a way for exceptional and complex circumstances to be properly assessed.
Lila's Legacy
We cannot change what happened to Lila.
We cannot give her another birthday.
We cannot give her back the time we lost.
But we can decide what we do with the knowledge her life gave us.
Lila taught us about strength, love, courage and hope.
She also showed us how exhausting it can be for families to fight systems while caring for a profoundly disabled child.
We don't want another parent to spend precious time that should be spent with their child, filling in forms, researching rules, making phone calls and begging for support that their child's medical circumstances clearly demonstrate they need.
We don't want another child to become another example of why the system needs to change.
Lila couldn't change the rules.
But perhaps her legacy can.
Please sign this petition.
Please share Lila's story.
And please help us make sure that children with complex disabilities and life-limiting conditions are seen as individuals — not simply as an age on a form.
For Lila.
For the children who come after her.
For every little bloom. 🌸💜
1,259
The Issue
End Age-Based Restrictions for Mobility Support & NHS Continence Care – In Memory of Lila.
Please help us make sure Lila's story leads to change.
On 31 May 2026, our beautiful daughter, Lila Maggie Dripps-Weir, died in my arms at just two years and ten months old.
Lila was not an ordinary child with ordinary needs.
She was a little girl with a rare, life-limiting metabolic condition called Pyruvate Dehydrogenase Deficiency, alongside severe hydrocephalus, epilepsy, profound developmental disabilities, blindness, deafness and significant physical disabilities.
She required constant monitoring, medication, specialist feeding, medical equipment and around-the-clock care. She could become critically unwell without warning and spent significant periods of her short life in hospital.
But Lila was so much more than her diagnoses.
She was our daughter.
She was a little sister.
She was funny, beautiful, incredibly strong and determined.
She had a smile that could light up a room.
We were told very early in her life that she might not survive infancy. She continued to surprise everyone, fighting her way through repeated periods of critical illness and giving us precious time we never thought we would have.
We would have done anything to keep her safe.
And that is why we are asking for change.
When age became a barrier to Lila's needs
As Lila grew, transporting her safely became increasingly difficult.
She was unable to sit, stand or walk independently and required specialist support.
When travelling in a conventional car seat, Lila's head could fall forward onto her chest. This created serious concerns about her airway and oxygen levels, and there were many occasions when her oxygen levels dropped and we had to stop the car and intervene.
We spent around £800 on a specialist car seat in an attempt to find a safer solution.
It only lasted around three months before her needs became even more difficult to manage.
We were subsequently advised that the safest way for Lila to travel was in a wheelchair-accessible vehicle, allowing her to remain safely positioned in her wheelchair rather than being transferred into a conventional car seat.
This wasn't about convenience.
It was about being able to take our medically fragile daughter safely to hospital, medical appointments and, when possible, simply out into the world.
But Lila was under the age required to access the mobility support we were seeking.
Despite medical evidence and supporting letters from professionals, her age remained a barrier.
And Lila didn't have time to simply wait for another birthday.
A child shouldn't have to reach a certain age before their medical needs are recognised.
Lila was living with profound and complex disabilities.
Her medical needs existed regardless of whether she was two, three or five years old.
A birthday would not have changed her physical disabilities.
It would not have changed her need for safe transportation.
It would not have changed her epilepsy, blindness, deafness, hydrocephalus or metabolic condition.
It would not have made her suddenly more medically complex.
Yet age-based eligibility rules meant that we were fighting for support while already dealing with an incredibly fragile child.
In the final weeks of Lila's life, while she was critically unwell and on life support and we knew that her time could be running out, we were still having to think about applications, forms, deadlines and whether we could access the support she needed.
Those were moments we can never get back.
We should have been making memories with our daughter.
Instead, we were fighting systems.
Continence support was another barrier
Lila also needed continence products because of her complex medical needs and at 2 years old was over 20kg.
At the time, we were told she was not eligible for NHS continence products because of her age.
This meant that we had to find and purchase the products she needed ourselves, including travelling to another town to obtain suitable supplies.
Again, this wasn't about convenience.
These were basic products required to care for a profoundly disabled child with complex medical needs.
For families already providing 24-hour care, additional financial, practical and emotional pressure can become overwhelming.
We became Lila's carers, nurses, advocates and coordinators
Because of the level of care Lila required, both of us had to leave employment and become her full-time carers.
Our lives revolved around:
feeding and tube care
medication
her ketogenic diet
monitoring her oxygen and vital signs
seizures
hospital appointments
emergency situations
specialist equipment
moving and handling
medical teams
care planning
advocating for our daughter's needs
We loved caring for Lila.
We would do it all again.
But families caring for children with profound disabilities should not have to spend their precious time fighting unnecessarily complicated systems to access support that their child's medical team has already identified as necessary.
This isn't only about Lila
Lila is the reason we started this petition.
But this petition is about the children who are still here.
Children with profound disabilities.
Children with complex medical needs.
Children with life-limiting conditions.
Children whose needs do not fit neatly inside an age threshold.
And the parents who are already doing everything they possibly can to keep their children safe.
We believe decisions about essential support should be based on the individual child's actual needs, supported by appropriate medical evidence and professional recommendations.
What we are asking for
We are calling on the UK Government, devolved administrations and relevant health and social care bodies to review age-based restrictions that can prevent children with significant disabilities and complex medical needs from accessing essential support.
We believe eligibility should take account of:
Clinical need
Functional ability
Medical evidence
Individual circumstances
Professional recommendations
The child's safety
The impact on the child and family
We are specifically asking for:
🦽 Mobility support
Age should not automatically prevent a child with significant mobility needs from being considered for appropriate mobility support where medical evidence demonstrates that it is necessary.
💜 NHS continence care
Children with genuine clinical continence needs should have access to appropriate NHS continence products based on individual assessment and clinical need, rather than being automatically excluded because they have not reached a particular age.
🩺 Individual assessment
Every child should be considered as an individual.
A child's birthday should not erase the medical evidence of what that child needs.
We know that systems have rules
We understand that public services need eligibility criteria and that resources have to be managed responsibly.
We are asking for clinical need to be properly considered when age-based rules would otherwise prevent access to support that a child genuinely and urgently requires.
There should be a way for exceptional and complex circumstances to be properly assessed.
Lila's Legacy
We cannot change what happened to Lila.
We cannot give her another birthday.
We cannot give her back the time we lost.
But we can decide what we do with the knowledge her life gave us.
Lila taught us about strength, love, courage and hope.
She also showed us how exhausting it can be for families to fight systems while caring for a profoundly disabled child.
We don't want another parent to spend precious time that should be spent with their child, filling in forms, researching rules, making phone calls and begging for support that their child's medical circumstances clearly demonstrate they need.
We don't want another child to become another example of why the system needs to change.
Lila couldn't change the rules.
But perhaps her legacy can.
Please sign this petition.
Please share Lila's story.
And please help us make sure that children with complex disabilities and life-limiting conditions are seen as individuals — not simply as an age on a form.
For Lila.
For the children who come after her.
For every little bloom. 🌸💜
Supporter Voices
Petition Updates
Share this petition
Petition created on 26 July 2026