A brighter future for Ellis
Donation protected
Let me introduce a special little boy named Ellis, who will be 4 in March. He was born 10 weeks early due to PROM and sepsis, He stayed on the neonatal unit for 3 months, from birth, which became another home to us all. During this he suffered a right side intraventricular haemorrhage (IVH) & a pseudocyst, it was also picked up that he had heart defects- ventricular septal defect (VSD) and a patent foreman ovale (PFO), following these Ellis was found to have enlargement to his right ventricles and temporal horn and volume loss to the parietal region/lobe in the brain- as a result of the brain injury at birth. To date he’s had 4 operations, 2 MRI’s, 1 lumber puncture, blood transfusions, and many appointments involving trips in and out of hospital.
Ellis has complex disabilities sustained from being born early. He currently has diagnosis’s of, intermittent dystonia with stiffness, which can leave him in lots of discomfort and upset due to muscle spasms and stiffness. Autism with cognitive delay- he can not talk or communicate and has very little understanding or awareness of danger, he is extremely vocal and we are very hopeful he will communicate with us one day. Hypospadias, plagiocephaly, He also has a linear nevus sebaceous on his forehead, which is currently being assessed for the other links as a syndrome. Bilateral pronovalgus with tightening of the gastrocnemius. Left sided weakness with postural scoliosis and hyper mobility, he has extremely low muscle tone around his trunk, so finds it extremely difficult to sit up unless He’s in his special seating or leaning against some sort of support. He has not long been in hospital for a peg feeding tube due to severe food aversions, FTT and allergies. And is still being assessed for an underlying condition.
Ellis attends a special educational school, community paediatrician, has a occupational therapist, a physiotherapist, speech and language therapist, neurologist, dietician, gastroenterologist, cardiologist, district nurse, independent support worker at Barnardo’s, a dermatologist, and the genetics team. So has many health professionals helping him along his journey. We are not sure what the future will be for Ellis, but he will get all the best support possible, along with all the health professionals to. Ellis has a specialised bed, a special seat for play therapy and meals, a wheelchair to help when out and for postural support, a walking frame for far distances and balance, leg splints (AFO’s and SMO’s), and a helmet. There are many more things we feel ellis would benefit from, now and in the future, but need help to meet all costs, some of these things are;
-Specialised shoes to support and fit splints which are around £80- £100+ per pair.
-A pressure foam mattress- around £450
-Next size activity postural support chair- enquiries per order
-DMO Lycra suit to help with postural support- quotes after measurements
-Rain cover and hood for his wheelchair £250-350
-Specialist car seat to support Ellis’s posture quotes after measurements.
-sensory and special needs educational toys.
As you can see Ellis is in need of constant assistance and requires specialist therapies and equipment to do most day to day tasks.
So far the NHS have been amazing, in providing the necessary treatment, equipment and therapy. However now that he is getting older and can see the impact of his disability, we need more specialised equipment and therapy that is not provided through the NHS and needs to be funded independently. So to provide Ellis with the best future, we need your help.
We will also need to adapt and change the way we live and have to constantly think about Ellis as he grows bigger and heavier and how this will impact on daily living.
If you can donate in any way, however small, towards keeping Ellis happy, and support us on this journey, it will be greatly appreciated.
You can also help by sharing this page, it would also be greatly appreciated.
If you want to know more, we have created a facebook page for you to follow. It mainly consists of photos of his journey, development, progress, and lots of updates on various appointments he’s had. We hope to See you there!
https://m.facebook.com/groups/1637545696457423
Our aim is to raise enough money to give Ellis all he needs and to give him the best future possible. Despite all Ellis has been through and still faces, he does it all with the biggest smile that could light a dull room. We can climb over a hill, with a monumental finish line, only to be greeted by a mountain, but we do it hand in hand with much needed support, guidance, and lots of smiles. People say your children look up to you as a parent, but with us it’s other way round, he’s our inspiration, hero, miracle, if he’s taught us anything, it’s to never give up or loose hope.

Ellis has complex disabilities sustained from being born early. He currently has diagnosis’s of, intermittent dystonia with stiffness, which can leave him in lots of discomfort and upset due to muscle spasms and stiffness. Autism with cognitive delay- he can not talk or communicate and has very little understanding or awareness of danger, he is extremely vocal and we are very hopeful he will communicate with us one day. Hypospadias, plagiocephaly, He also has a linear nevus sebaceous on his forehead, which is currently being assessed for the other links as a syndrome. Bilateral pronovalgus with tightening of the gastrocnemius. Left sided weakness with postural scoliosis and hyper mobility, he has extremely low muscle tone around his trunk, so finds it extremely difficult to sit up unless He’s in his special seating or leaning against some sort of support. He has not long been in hospital for a peg feeding tube due to severe food aversions, FTT and allergies. And is still being assessed for an underlying condition.
Ellis attends a special educational school, community paediatrician, has a occupational therapist, a physiotherapist, speech and language therapist, neurologist, dietician, gastroenterologist, cardiologist, district nurse, independent support worker at Barnardo’s, a dermatologist, and the genetics team. So has many health professionals helping him along his journey. We are not sure what the future will be for Ellis, but he will get all the best support possible, along with all the health professionals to. Ellis has a specialised bed, a special seat for play therapy and meals, a wheelchair to help when out and for postural support, a walking frame for far distances and balance, leg splints (AFO’s and SMO’s), and a helmet. There are many more things we feel ellis would benefit from, now and in the future, but need help to meet all costs, some of these things are;
-Specialised shoes to support and fit splints which are around £80- £100+ per pair.
-A pressure foam mattress- around £450
-Next size activity postural support chair- enquiries per order
-DMO Lycra suit to help with postural support- quotes after measurements
-Rain cover and hood for his wheelchair £250-350
-Specialist car seat to support Ellis’s posture quotes after measurements.
-sensory and special needs educational toys.
As you can see Ellis is in need of constant assistance and requires specialist therapies and equipment to do most day to day tasks.
So far the NHS have been amazing, in providing the necessary treatment, equipment and therapy. However now that he is getting older and can see the impact of his disability, we need more specialised equipment and therapy that is not provided through the NHS and needs to be funded independently. So to provide Ellis with the best future, we need your help.
We will also need to adapt and change the way we live and have to constantly think about Ellis as he grows bigger and heavier and how this will impact on daily living.
If you can donate in any way, however small, towards keeping Ellis happy, and support us on this journey, it will be greatly appreciated.
You can also help by sharing this page, it would also be greatly appreciated.
If you want to know more, we have created a facebook page for you to follow. It mainly consists of photos of his journey, development, progress, and lots of updates on various appointments he’s had. We hope to See you there!
https://m.facebook.com/groups/1637545696457423
Our aim is to raise enough money to give Ellis all he needs and to give him the best future possible. Despite all Ellis has been through and still faces, he does it all with the biggest smile that could light a dull room. We can climb over a hill, with a monumental finish line, only to be greeted by a mountain, but we do it hand in hand with much needed support, guidance, and lots of smiles. People say your children look up to you as a parent, but with us it’s other way round, he’s our inspiration, hero, miracle, if he’s taught us anything, it’s to never give up or loose hope.
Organizer
Keri Waterworth
Organizer
