At a young age we noticed that Kelsey, had difficulties. 

She took longer to start walking than most her age, when she did eventually get to walking confidently, she would walk for maybe 5 minutes before she was asking to be picked up, we would always try to encourage her to walk further, at the most she would manage 10 minutes of slow walking. She would tell us “Ouch” and point to her legs. To begin with everyone believed this was just to her not wanting to walk and wanting to be held all the time, by the time Kelsey was 2 years old she was no better but would cry out from the pain and drop to the floor
We took her to see the GP so many times, but had been told by the doctors over and over she was fine, that it may be growing pains, that she may just not want to walk, and that it would settle down. 

In 2016 at 3 years and 9 months old we finally got a referral to hospital, at this point Kelsey was suffering pain in her hands, wrists, and legs from the thigh down. The local GP referred us for an x-ray which confirmed that Kelsey's pain was being caused by an exostoses in her proximal fibula and distal tibia. She had a hard prominence on the radial side of her wrist on the left but no restricted movement. However, she did have quite striking hypermobility of the left knee, more so than the right. Kelsey was started on regular paracetamol, with a care plan that she was to take breaks in between activities at pre-school while we awaited the meeting with a specialist.

In 2017 we moved Kelsey to Spain, we found the climate was so good for her, she came off almost all the medication and only needed a few doses of Paracetamol in winter months, but in general the pain was easily managed with hot baths and warm compresses. She was doing so well but we did notice more exostoses were appearing what felt like weekly. 

In 2018 we returned to the UK due to a loss in the family which had a major impact on all of us. Unfortunately, within two weeks of being back in the UK, Kelsey’s pain gradually began to come back. 

In 2019 Kelsey has surgery on her left wrist to remove a large tumour from the radius close to her wrist, that was affecting the growth of the Ulna pushing it outwards. She recovered well but was really struggling with mobility. She could only walk for 5 minutes at a time without sobbing in pain. We started Paracetamol and Ibuprofen again. Thankfully we had great friends who would help us and take it in turns to carry her on the 20-minute walk to the nearest school. I (Mum) wasn’t driving then but was taking lessons. Kelsey was taking full doses daily of paracetamol and ibuprofen and was still struggling so much with pain. She was referred to Palovarotene drug trial, however this drug trial was cancelled due to safety measures and Kelsey’s age at the time. She was booked in for surgery 18th July, then 25th July, then 26th July, then 15th August all were cancelled because of covid-19 then she was removed from the surgery list and we were offered an outpatients appointment.
We could not see her live like this anymore so returned to Spain with her. After around a month we saw clear improvements and was able to start reducing her medications and it was lovely to see her live like a normal child, to be able to play without the fear of being in pain. After 3 months she was completely off the medications and only required the odd dose her or there when it was cold/wet or damp. 

In 2022 we were forced back to the UK due to Brexit! Again, within two weeks of being back in the UK, Kelsey’s pain gradually began to come back, this time with a vengeance. Kelsey was referred to the specialists as she had severe reduced activity and was struggling to manage a single day in school. We had an MRI carried out on Kelsey’s legs which showed multiple exostoses on her legs but there was a large one which was growing into her hamstring causing it to contract. Kelsey was put on Dihydrocodeine for pain management as she was waking up screaming in pain in the night. Kelsey was getting cramp in her leg almost daily along with pins and needles down one leg. We were running hot baths at 1am most mornings to try to get on top of the pain. Kelsey was sent home from school almost every day as they couldn’t help her. She was exhausted and hurting. Kelsey was put on a list for surgery to have the exostoses removed from the, but it was a risky surgery as the exostoses was adjacent to the neurovascular bundle. They told us there was a risk that she could lose her leg if for any reason this was damaged during the removal of the exostoses. Kelsey decided she wanted the surgery as she just wanted to be free from the pain. She started physiotherapy as she was also diagnosed with hypermobility in her joints which I am told comes in par with this condition. 
During this time, we had to move her to a smaller school which was able cope with Kelsey’s needs better due to its smaller class sizes. They started an EHCP and was giving her a heated wheat pack in school and anything else they could to keep her warm and comfortable. She was finally doing full days in school and loving it, on days when she was in pain and couldn’t make it into school, she was on a video link to the class, so never missed out on her education. She caught up on her learning and had regained confidence in teachers, that they would help her.
We had the biggest birthday Party for Kelsey, and everyone came. Family came up from London, from Yorkshire and those from overseas flew over to celebrate her 10th Birthday. She had a great time, with all her friends from her old school and her new school. 

In 2023 Kelsey was operated on to remove the exostoses on her leg, which was growing into her hamstring. This resolved the cramping of her hamstring and most of the pain in that area of her leg. Kelsey was referred for more physiotherapy and to occupational therapy. We attended an occupational therapy appointment which honestly was pretty useless, they had no ideas what Kelsey’s condition it was how affected her or how to help her. All that they said they would suggest we already had in place. Kelsey has special grip pens as she has 15 exostoses throughout her fingers. She will need to have surgery on them at some point to correct the alignment or her fingers as the exostoses are causing them to deform. 
They have found that Kelsey’s spine is curving, this is something they are going to be monitoring as she grows to see if its going to correct itself, but they said it explains why her back in hurting. She was referred to orthotics to try and help with her pain in her ankles, legs and back. Kelsey was given specialist insoles and told she needed to wear boots with a supportive heel. A referral was made to the chronic pain clinic November as Kelsey has stopped eating properly.

In 2024 Kelsey now has an EHCP in school, she had to change schools again as the council closed her previous school for the very reason we chose it, being too small. Anyway, she loves her new school and is happy, she has made some great and supportive new friends. We had a few teething problems with the school sticking to the EHCP but now hopefully that is resolved. She now has a heated blankets in school, one that runs off the mains power and one that runs off power banks. She has medication in school and is now on Anti sickness medication and a stomach lining medication. Kelsey has had a few stays in hospital as she is having bouts where she has no feeling in her legs and can not weight bare at all. She’s been suffering a lot of pins and needles since last year which are still present, these come and go and we can’t pin point what is causing them. She is back on the waiting list for surgery on some of the exostoses and still waiting for the chronic pain clinic to contact us. Kelsey has been referred to a plastic surgeon for the surgery on her hands, also waiting for that too. 

Will update at the end of the year……………………