All hands in – Stronger together for CDKL5

CDKL5 is more than a diagnosis – it’s a daily challenge for those affected and their loved ones. To mark CDKL5 Awareness Day, we spoke with the Olsson family made up of Anna and Peter, parents to Linnea who has CDKL5 and two other daughters, to hear how their family unite to ensure Linnea thrives, and the crucial role of their wider support network.

Support from and for family members

Anna is Linnea’s full time carer and Linnea goes to school Monday to Friday, but the whole family comes together to support her.

“Our two other daughters are amazing sisters to Linnea and support in so many ways including with her seizures. They have done that ever since they were very young. Linnea had her first seizure at just three months old and her sisters were just two and five but would call out to us to come and help. They love her very much and Linnea really enjoys spending time with them.” 

However, they share: “It can be hard to find time for ourselves and for her siblings, as most of our attention goes to Linnea due to her needs.”

To ensure that all the family, including Linnea’s sisters get the support they need, they explain: “Anna’s sister and her husband take care of Linnea one weekend a month to give us time to spend with our two other daughters; during this time we do things they enjoy, such as going shopping, bowling or just relaxing at home.” 

Outside of their family, Peter tells us: “Linnea’s school and rehabilitation center also play a big role in our support network and caring for Linnea – they are amazing, they activate her on so many levels and support us as parents. We have regular contact with the healthcare professionals in Linnea’s rehabilitation team (e.g., physiotherapist, nutritionist), and occasionally speak with Linnea’s doctor too.”

Understanding CDKL5 better

A key challenge highlighted by the Olsson’s is a general lack of understanding about CDKL5: “Healthcare professionals are often not up to date with CDKL5, so we often have to educate people ourselves. For example, Linnea’s body is very limp so we need to explain this to people who care for her so that they are able to provide the best care and support.”

The wider CDKL5 community play an important role in supporting parents going through similar challenges and sharing up to date information.

“We have lots of friends who support us, but they do not always understand what having a child with special needs is like – we need to spend all of our time with Linnea because of her seizures. The CDKL5 community have been amazing in providing lots of information about CDKL5, there are other parents who understand, and this has been important in our journey.”

Although there is still a widespread lack of understanding about CDKL5, things are improving: “When we got Linnea’s diagnosis ten years ago, there was nothing on the internet about CDKL5. Now, it is so much easier to find information and there are support groups. We are part of several Facebook groups for parents of children with CDKL5.”

Stenght and hope from each other

Linnea’s parents want her to have a chance to develop, however they frequently face challenges in getting her the support she needs. Their support network gives them the strength to keep going. 

“Linnea can’t walk, and perhaps never will – it is really difficult to get a walking aid and we haven’t been able to get one yet. You have to fight for everything, but we will always keep trying.”

“Linnea is an amazing girl and wonderful the way she is; she is so strong and gives us so much love and hope.”

To other people who may not have a strong support network, such as a big family to help out or access to a rehabilitation center, the Olsson’s suggest: “Make sure your family is safe and strong, and stand together. Never give up.”