Evie, four, suffers from an extremely rare condition called Juvenile Xanthogranuloma. This rare condition is most commonly found in children under 2 years old. However it can sometimes occur in older children and adults. The condition shows itself as orange-red macules (skin discolouration) or papules (pimples). They can appear on the head, face, or neck of the person. In very rare cases, around 1 in 10 million, the condition can be systematic. This causes tumours on other the person’s internal organs.
Unfortunately for Evie the condition affected her central nervous system, glands on her brain, her skin, and caused damage to her retinas and optic nerve. The condition has left her blind in one eye, and partially sighted in the other.
During her diagnosis in Hull she was sent all over the country to see specialists. She has visited doctors in Oxford, Leeds, and Birmingham. During her treatment in Birmingham Children’s Hospital by Dr John Ainsworth she was tested using a piece of kit called the RetCam 2. Unfortunately the Hull and East Yorkshire Eye Hospital does not currently have this equipment.
Over the next few, but long, years Evie’s treatment finally lead to the remission of the disease. She’s finally able to look forward to some of the things many of us take for granted. She is excited to be able to visit Blackpool and see the lights. If it wasn’t for the excellent work of the NHS, and determination of her parents, this may not have been a possibility.
The RetCam 2 is an extremely advanced camera used to image the inside of the eye. It is used to diagnose conditions in children that were previously difficult to diagnose. Older equipment yields much less accurate results than this equipment can. The difference being some conditions may get missed using traditional equipment, or even misdiagnosed.
Some, of the many, uses of this equipment includes:
- Retinopathy of Prematurity – This condition can affect premature babies. It’s caused when the blood vessels around the retina grow abnormally. The RetCam 2 can make monitoring this condition much easier, and help some of the 60,000 premature babies born each year.
- Paediatric Ocular Diseases – The equipment can be used to monitor ocular diseases in children, and monitor the progress of diseases. It can help compare previous images of the child’s eye to see how treatment is progressing.
- Operating Theatres – During essential operations this equipment can help monitor the situation of the child’s eye.
- Detection of Retinoblastoma and “Shaken Baby” syndrome – Early detection of cancers of the eye can make all the difference in treating the disease. Having equipment such as this at the ready is vital in the quick detection of some eye cancers.
Unfortunately this equipment comes at a cost. That’s where Evie and her family are trying to step in. Due to reduced funding for the NHS the Eye Hospital does not have it in their budget to purchase this equipment.
Evie and her family have set up a website (which can be found here). They are trying very hard to raise the funds to purchase a RetCam 2 for Hull and East Yorkshire Eye Hospital. They are hosting events and trying to help raise awareness of this wonderful piece of equipment that can help change children’s lives.
With events such as a Psychic Night at The Hop Pole and a Race Night planned early in 2018, the goal of £105,000 will hopefully edge closer.
Next May the group are attempting to get 50 walkers to complete the Yorkshire Three Peaks Challenge. With an aim of raising £500 per walker, this challenge could help raise almost a quarter of the funds! Why not sign up and give yourself a challenge? Or if walking’s not your thing then take part in some of the great events they have lined up?
Then later in May Evie will be holding a Fun Day at the Hop Pole pub in Hull. She will be taking over the entire pub, inside and out, with tons of activities. There will be raffles, bouncy castles, craft stalls, auctions, and of course plenty of drinks for the grown ups!
Finally in August there will be a culmination of the long effort with an event in the Village Hotel. This event will hopefully mark enough funds being raised to fund the RetCam 2 for the eye hospital. It’s bound to be a great evening and is likely to sell out fast. So be sure to book your tickets as soon as they go on sale!
Without this equipment children and their parents will have to travel all over the country to get a full diagnosis. There’s no worse feeling than having to travel hundreds of miles with your sick child. This equipment can not only help give accurate diagnosis to thousands of children each year, but also take the strain off parents and guardians.
Help Evie Raise Money
If you have any way of helping raise money for this great cause we’re sure they would be delighted to hear from you, as would we!
If you would like to donate to this cause you can donate via the JustGiving page here.
Spread The Word!
Please share this cause with all your friends and family, and help Evie and her family get this amazing equipment for our local Eye Hospital. Even if you currently cannot afford to donate to this worthwhile cause, as this time of year is usually painful on the bank account, please share with as many people as you can.
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