Alfie was born on 10th June 2007, and for the first eight months of his life, he was healthy and happy like any other little boy. Suddenly, almost overnight, it became apparent that he had health issues: one of Alfie’s legs was a lot bigger than the other and his spine was curved.
Alfie had an MRI scan in December 2008 and as a result, we were sent to Great Ormond Street Hospital in London – a trip that changed our lives forever. More than 600 miles from home, we finally received a diagnosis – Alfie had Lymphangiomatosis. The disease was in his right leg, pelvic area and in the marrow of certain bones. We were also told the condition was preventing his blood from clotting.
Alfie’s health deteriorated gradually and we embarked on the next phases of a journey which was challenging and fraught. It included one five-week period when Alfie suffered internal bleeding, high temperatures and was subject to countless blood transfusions. At this point, we feared the worst as the Doctors advised that if the bleeding did not stop there would be little hope for Alfie.
Luckily, Alfie is a fighter. The bleeding stopped and his temperature dropped to a normal level. Alfie then began a new treatment plan and a week later we returned to Aberdeen Hospital for monitoring there. Eventually, we were allowed home.
In 2011, when he was healthier, the doctors altered Alfie’s treatment plan again. Almost instantly we noticed a difference in Alfie’s well-being, he was in less pain and was a much happier little boy.
Throughout 2012 and 2013 Alfie was frequently admitted to the hospital due to unexplained high temperatures. The long-term steroid use had caused Alfie’s adrenal glands to stop functioning properly; meaning every time he had a high temperature his body couldn’t cope.
Alfie had a second MRI scan in 2014, which showed the disease had not spread – the best news we could have hoped for. Unfortunately, Lymphangiomatosis has taken its toll on Alfie’s physical development and at the age of 9, Alfie had not been able to walk since he was 5.
We learned about a surgical procedure which could help Alfie walk again. However, he must be able to bear weight on his right leg before the doctors will proceed with the operation. Alfie has since been subject to intense physiotherapy to try to strengthen his good leg and be able to weight bear through the bad leg to be strong enough to have the operation.
Carrying out this operation on a child with Lymphangiomatosis poses a high risk of infection and lymphatic leakage because they will be disturbing the lymphatics during the procedure. We are unaware of another child or adult who has gone through this procedure and there is no evidence to suggest it will definitely give Alfie the chance to walk again.
The operation went ahead in January 2017. The doctors performed a hamstring release (to help straighten the contracted knee) and inserted ‘eight plates’ into the front of the right knee (to slow down the growth process). Sadly, they were unable to straighten the leg fully during the surgery for fear of nerve damage but were very pleased with how quickly Alfie recovered. Alfie was put into a full-length plaster cast for 5 weeks to keep the leg in position.
Over the next year, Alfie endured daily physiotherapy sessions with little improvement. The muscles are extremely weak from years of him not being able to weight bare and, even with the exercises, he didn’t gain the strength needed to stand on that leg to allow him to walk. In the summer of 2018, a decision was made to stop the physio sessions. It was time for Alfie and his family to accept that nothing more could be done and that Alfie would now be a full-time wheelchair user. The decision to stop was actually a relief to both Alfie and his parents. How long do you keep doing something when you can’t see any improvement? Alfie’s aim now is to maintain the mobility and strength that he has through his daily life and activities, like swimming and wheelchair basketball.
We had just come to terms with Alfie being a full-time wheelchair user when he started to have bouts of diarrhea, which left him housebound and having to sleep on the downstairs living room sofa as it was the nearest room to the toilet. Doctors said that because of Alfie’s low immune system this can cause a build-up of bad bacteria in the gut, which in turn causes diarrhea. Luckily, this can be controlled by a medication but will be another long-term problem that Alfie has to deal with – another complication of the disease.
Visit the timeline of Alfie’s journey