To mark World Sanfilippo Awareness Day, we are sharing Kayden's story, who loves sunshine, swimming and Peppa Pig. Kayden was diagnosed with the condition aged two after becoming very unwell. His mum Rachel gives an insight into life with MPS III and explains how the family are adapting to Kayden's changing needs.
Kayden was born in 2014. Throughout his first nine years, he had respiratory issues and he frequently caught head colds and ear infections. I recall him often being prescribed antibiotics. By 18 months, Kayden began to regress in his speech starting to babble like a baby again.
We also noticed his stomach was quite distended and looked bloated, so we made an appointment with our local GP where we were told that he was healthy and not to be concerned.
At age two, Kayden became very unwell and ran a temperature I couldn’t control. We took Kayden to hospital and he was kept in a ward overnight where I discussed my concerns on his regression with speech and past health. Kayden became very unwell and developed pneumonia which worried me greatly. It was a very challenging time for the whole family as Kayden ended up staying in hospital for two weeks.
A consultant thankfully had awareness and knowledge of MPS and brought to my attention that Kayden’s symptoms were similar to those with the condition.
From there, tests were carried out to determine the diagnosis of MPS III Sanfilippo.
Kayden’s diagnosis impacted all the family as you are essentially grieving the loss of your child’s future and it is difficult to watch your child lose basic motor skills.
It took time to process the condition and the severity of it.
In Kayden’s younger years, he was hyperactive and required supervision 24/7. Daily tasks like shopping could become difficult if Kayden was unsettled. He explores the world with his mouth (sensory related) which meant any object within arm’s reach would go into his mouth. Eventually we had an extension to our property, which included a bedroom and wet room for Kayden. We were also able to get a safe space bed which gave me peace of mind at night.
It can be isolating and challenging to care for a child with a genetic disorder.
Every year brings new symptoms and challenges but I do have support from family, Kayden's school and the MPS Society, which makes these challenges more manageable.
We have hired a fantastic carer who spends time with Kayden on Saturdays and means I can have quality time with my daughter.
Kayden enjoys sunshine and swimming. As a family, we like to go on holidays abroad and recently visited France. It was ideal for us as we could travel by boat and transport Kayden’s essential equipment such as his feeding chair, wheelchair and travel safe space bed. We even had enough room in the van to bring a trampoline which allowed him to enjoy a bounce and to stretch his legs. Kayden also enjoys indoor soft play areas. In recent years this has become a blessing due to his poor balance. He loves watching his favourite TV shows, Peppa Pig and Little Einsteins, in his sensory bedroom which has been designed specifically for his ever-changing needs.
The MPS Society has been a great support for us as a family and I feel I can contact our dedicated Support and Advocacy Officer at any time with my concerns or for advice.
They offer supportive information and can put us in touch with other families who have been affected by MPS. We follow the MPS Society UK Facebook page which keeps us up to date with any upcoming events and a private support group where families can ask questions and seek help from other families who are going through the same experiences.
We are here
Our experienced Support & Advocacy Team can provide emotional support, practical advice, guidance and signposting where needed. Steve is our dedicated officer for MPS III; you can get in touch with him and the team via phone on 0345 389 9901 or reach out via email.
We have gathered more information about MPS III and helpful resources including an in-depth booklet with information for individuals, parents and families here.
