Allan and Megan’s story: leading the way
At on year of age, Megan would scream and cry, had weak muscles, and experienced major seizures. She couldn’t speak and could neither walk nor process what she was seeing, but it would be several years before her condition was fully understood. At age 6, Megan was a participant in a genetic testing project, through which it was discovered that she possessed a FOXG1 mutation and was then diagnosed with FOXG1 syndrome.
Allan, Megan’s grandfather and guardian, felt relief after a diagnosis was finally obtained for Megan’s condition; however, this end marked the beginning of another journey – the search for more information. At the time, Allan found hardly anything FOXG1-related on the internet. His greatest source of information was through a Facebook group formed by parents of children with FOXG1 syndrome, which he feels has been a great help. One member of the group has a scientific background and is able to provide explanations of scientific terms and new research to parents trying to better understand their child’s condition.
Initially, Allan received very little support from healthcare systems, although having the diagnosis and backing from Megan’s neurologist has made Allan feel more listened to, and access to care for Megan is more streamlined. For example, if Megan has an infection, it will be immediately treated now that nurses and GPs are more aware of her condition. Also, Megan has special access to the hospital and thus would not need to go through A&E to be seen in an emergency. As for governmental support, Allan states that social work is hard to get a hold of now that Megan has a diagnosis, and he had to raise funds himself to obtain a wheelchair swing. However, he recognises that the Carers (Scotland) Act and Children (Scotland) Act give children and their carers more than what they may receive in other countries.
Despite the continued need for more backing and understanding, one very important bit of support Allan and Megan have received is through Glenlaw House respite, which provides individualised care for children with complex needs. Here, Megan can interact with other children in a safe and stimulating environment, and Allan can take time to rest with the comfort of knowing that Megan is in good hands.Importantly, meeting families at Glenlaw House sparked an idea in Allan’s mind. Allan proposed that a local support group be formed for children with complex needs and their carers. This project has since become extremely successful and has brought together a community of people who might otherwise feel alone in their experiences. The group is involved in many activities, such as a biweekly wheelchair dancing class (which those of us who went to visit Allan and Megan are so grateful to have been invited to!
https://youtu.be/buj_DxHZjFw), walking groups and Christmas parties.
We felt very privileged to speak with Allan and came away from our conversations with a sense of his positive energy and strong dedication to his granddaughter as well the wider community of children with complex needs and their carers. We feel he is very much leading the way into the future of FOXG1 syndrome support with the work he is doing.
The gifts at the Christmas parties are cleverly designed for the children’s needs, such as sensory books, which not only stimulate their minds, but can even be used to help children understand their routine for the day.
Outside of the support group, Megan attends school, where she uses a button called Big Mac to send messages between Allan and her teachers about her activities that day. However, going to school and interacting with people who do not fully understand Megan’s condition still presents challenges. Often, Megan’s involuntary movements can be confused with a seizure, and so Allan usually receives concerned phone calls from the school. Allan explains to us that you can tell Megan is having a real seizure when her pupils are dilated.
Additionally, as FOXG1 syndrome is a rare condition, Allan has often resorted to explaining it as “similar to Rett’s [syndrome].” He hopes that through telling stories such as Megan’s, we can raise awareness for FOXG1 syndrome and the diversity of symptoms that can be involved. Allan keeps up to date with the ongoing research on FOXG1 syndrome, but for now focuses on what helps Megan’s day-to-day life and makes her happy.
Allan uses touch language to communicate with Megan as she can’t process what she sees. Megan was expected to need a hip replacement at age 10, which in the end was not needed as horse riding therapy helped to set her hips. Like many children with FOXG1 syndrome, Megan loves swimming and music, as well as floor time, where she can roll around and play with other children. Allan reflects on a change in his mindset regarding Megan’s care. “I let Megan take the lead. I support her, instead of trying to make her reach certain milestones [such as crawling], because her limits are different.”