Kion, by his mum Kerry

Kion was born weighing a healthy 8lb 8oz following a normal pregnancy and birth. All was well for the first 3 weeks but then Kion became unwell and collapsed in heart failure. Cardiologists at this point, felt that this must be caused by some kind of virus and we were told to prepare for the worst. Thankfully Kion did recover and returned home.

 However, Kion became unwell again at 4 months old and was put back on a life support machine. He was diagnosed with Dilated Cardiomyopathy and his specialists warned us that a heart transplant may be his only option but informed us of the limited number of donors. Amazingly, Kion defied the odds and fought hard to survive.

At 6 months old Kion was diagnosed with Cone Dystrophy, Nystagmus and Photophobia. He was registered partially sighted and it soon became apparent that Kion had very little useful vision and he became extremely sensitive to light.

Kion spent the first year of his life in and out of hospital. He was diagnosed with a condition called WAVE (wheeze associated with a viral episode). Every time he got an infection he would require steroids and an inhaler. His heart remained stable throughout this time and gradually showed signs of improvement.

Kion was finally diagnosed with Alstrom Syndrome at around the age of 2. While this was a devastating diagnosis, I was supported by my family and Alstrom Syndrome UK.

Kion had started to put on weight once he stopped breastfeeding at the age of 15 months and by the age of 3 he was very overweight. Once I gained a better understanding of Alström Syndrome I was able to effectively manage his diet and exercise and Kion’s weight has stabilised over the past few years. However, food continues to be a major issue for him and it is very frustrating for him as he eats much less than his peers.

Kion was diagnosed with a moderate hearing loss at the age of 5. He was also referred to a Respiratory Specialist as he began to have regular chest infections and a constant runny nose and he has also been diagnosed with Scoliosis as he has a slight curve in his spine.

Kion is now eleven years old and his heart appears to be normal and is functioning well. He will remain on medication for the foreseeable future.  

He is now registered blind although he does have some useful vision. He attends a mainstream school and is in the process of transferring to Secondary school.

We continue to be supported by Alström Syndrome UK and Kion is very closely monitored by the specialised multi-disciplinary team at Birmingham Children’s hospital.

Kion would like to help raise money for Alstrom Syndrome UK, the charity who has supported us so well over the past number of years. ASUK have been instrumental in raising the profile of this extremely rare condition, developing specialised clinics and initiating research to help gain a greater understanding of the complex nature of Alstrom Syndrome.

Life is not easy for Kion but despite everything he leads a very active and fulfilled life and he is an intelligent and caring boy. I am so lucky to be his mum!