Peggy and Emily’s story: persistence and bravery

Peggy and Emily’s story: persistence and bravery

If you saw Emily playing in her school playground, you wouldn’t immediately know that she has a disability. She would look by all accounts to be a happy child laughing and racing around after her friends. If you met her, you still might not realise straight away, until you asked her a question to which she didn’t have the capability to process what you said or form a response to you. We all hope that in this situation we’d all respond with understanding and kindness, recognising Emily’s disability and accepting it. However, in reality, many people who encounter Emily do not have this kind of reaction.

FOXG1 children are all unique and diverse, and in Emily’s case she falls on the mild end of the spectrum. But the irony is that because she appears on first glance like the other children at her school, she often encounters situations in which people don’t understand her disability. For her mum Peggy, she must be continually on guard, to face this stigma when it arises and do everything possible to protect Emily as she grows up in a world that still doesn’t treat people with disabilities in an inclusive way all of the time.

“It happens often. Emily wore nappies at school until she was 6 years old, and we heard the comments sometimes from the other children, but parents wouldn’t really know what to say or didn’t want to step in. You have to continually explain it to people. It would be better for Emily if people were more accepting of the fact that disability is not always visual”, says Peggy.

When we spoke to Peggy, we came away in awe of her persistence and her bravery. It is a hard job being a mum to someone who has a disability, because you have to fight for them at every opportunity. Peggy has fought for Emily at so many moments in her life, to get her into the right school, to get her adequate support in the classroom and even to get her the medication she needs to get to sleep well at night. She has faced outright rejection from speech and language therapists, bluntly telling her that “there’s no point” bothering with her child. She has heard her child being openly mocked by other children, with no reproach. And they both have faced a long journey to actually receive the FOXG1 diagnosis.

“Emily actually went through all of her early years without a diagnosis. We went from geneticist, to paediatrician, to neurologist and no one had answers. Then, we got recommended the triple DDD study, called ‘Deciphering developmental disorders’. We didn’t think we’d get anything back from it, but it was one year ago now that they came back and said yes, it is FOXG1”

But getting a diagnosis also raised more concerns for the family.

“We got lots of complicated information and that was it really. The stuff we did get was very scary as it was the worst possible case scenario. I thought, Emily is not like this, but it made me very scared that she might become worse from reading it”, says Peggy.

What we came away from our conversation feeling is the special kind of bravery that it takes to battle these kinds of complex emotions and worries and stay strong for a child with a disability facing the challenges that Emily does. We also felt a very strong sense that it is not just the job of people directly affected by FOXG1 to be raising awareness of these issues, but that it is the job of all of us to be allies to people with disabilities in society, helping to raise awareness and reduce stigma in every moments of life. We wish Peggy, Emily and their whole family a happy future. Speaking to Peggy has taught us that it won’t ever stop being hard work, but that knowing you have people on your side can be so meaningful during the fight for acceptance and equality.

It is important to raise awareness and create avenues such as FOXG1 UK for families to connect and share knowledge, because families living with FOXG1 are the experts. Doctors and neurologists don’t completely understand FOXG1. Yes, FOXG1 does affect one gene, but even if only one gene is affected, it can lead to a complete range in the symptoms children will experience. This is why we need to give parents more information about how symptoms can vary, to avoid the worst-case-scenario thinking and promote an individualised approach to a child’s development with FOXG1 and other rare neurodevelopmental disorders.

We also spoke about Peggy’s hopes and fears for Emily as she grows up. “It gets harder and harder to be honest, because she is getting older, but she hasn’t got the understanding about the world that other teenagers would. I worry about how people will treat her in the future”, said Peggy.

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