Issy is our 11 year old beautiful eldest daughter, who was heartbreakingly diagnosed earlier this year with Adolescent Idiopathic Scoliosis (AIS), which is a curvature of the spine.
The journey since diagnosis has been very tough as we've watched Issy's back and ribcage curve out of shape more and more, and dealt with her increasing pain and discomfort. Her latest x-ray at the end of August, showed Issy to have a thoracic curve of almost 60 degrees which puts her in the severe category and therefore requiring critical surgery before her spine starts to affect her heart, lungs and other internal organs.
In the UK, they currently only offer spinal fusion surgery which involves using screws and rods to straighten the spine. Aside from it being a very invasive procedure, it will result in the loss of flexibility in Issy's spine and can cause problems such as osteoporosis later in life.
Issy has always been a very sporty girl, involved in lots of sports clubs, representing her school and the Borough in various sports and athletics. In particular, she has enjoyed competing in cross country and swimming at county level, with swimming being her main hobby (she currently trains 3 times a week). Since the summer, Issy's pain has increased making it very difficult for her to take part in most sports and her swimming training is now even beginning to be affected. This has been very upsetting and hard for her (as I'm sure those of you who know her can imagine) and part of the reason that has led us to look at alternative treatment for Issy in order to keep her flexibility. We desperately hope that following surgery, Issy will be able to go back to enjoying all of her sport.
So....after carrying out lots of research and talking to various medical professionals, we have now decided to take Issy abroad for surgery so she can have an operation called Vertebral Body Tethering (VBT). This procedure is fairly new and although there is a hope that it will eventually be available on the NHS, the trials to be carried out for this will be too late for Issy.
VBT works much the same as an orthodontic brace. It is done via keyhole surgery and involves screws being inserted into the vertebrae and then a flexible cord being attached to the screws. The cord is then pulled to straighten the spine as Issy continues to grow. Ultimately, this type of surgery will hopefully result in a straighter spine without compromising Issy's flexibility and therefore allow her to live a pretty much normal life.
One of the main issues with VBT surgery is that it has strict parameters for candidates and it is therefore time critical for Issy, due to the size of her curve and how much growth she has left in her spine. We are due to fly out to the US in November and meet with a surgeon in Philadelphia so we can find out if Issy can be treated there. We also have an appointment in Germany with a surgeon there who can carry out the procedure if the American surgeon can't do it in time.
Wherever Issy ends up having surgery, it carries enormous costs for flights, accommodation, treatment, and post operative care. Unfortunately, we are unable to cover all of these costs on our own which is why we are appealing for your help. We sincerely appreciate any help and amount you can donate to our cause, it has always amazed us how generous and supportive people can be in times such as these.
Many thanks, Rachel, Chris & Issy.
Whilst we have your attention, we would also like to raise awareness of AIS. Adolescent Idiopathic Scoliosis typically affects 2—3% of children between the ages of 10-18, with 5 in 6 children being girls. It is not known what causes it and it's suddenly onset through puberty. Many children do not need treatment but early detection is key. In Issy's case, we noticed that one of her shoulder blades had started to stick out further than the other. Other indicators can be misaligned hip's, ribs sticking out, and head not sitting in line with the rest of the body. We then performed an 'Adam's forward bending test' where it became obvious that one side of her ribcage stuck out much further than the other. This test used to be routinely performed by GP's or the school nurse where they would feel down the length of the spine as a child bent forward and they would look for obvious misalignment. Unfortunately, this check is no longer carried out as routine in the UK so we can't stress enough how important it is you check your own children regularly. Our youngest daughter is only 8 but we are keeping a close eye on her and will continue to check her on a regular basis. As we say, early detection is key and can help prevent surgery.
DonationsSee top donations
- Jean Highfield
- Graham Hooton
- Martin Hooton
- Vin Hooton
Fundraising team: Team Simpson (2)
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more