It is the 2nd annual Aicardi syndrome awareness day. Today is an important day to me personally as it recognises the condition my daughter has as a primary diagnosis. Today I hope lots of people will be specifically thinking about Runa and her Aicardi sisters, brushing up on their understanding of the condition and maybe even wearing pink and purple clothing- the Aicardi syndrome colours.
In my house it is obvious that this is far from the only day we think about Aicardi syndrome. A day doesn’t go by when we don’t think about it as it is an intrinsic part of Runa- so much of who she is, is influenced and affected by this condition.
When thinking about the effect Aicardi syndrome has had on our family, I started thinking specifically about what it has meant for Nina; Runa’s big sister.
Someone once said “If you want to know how to treat a child with special needs, watch their siblings”. This is so very true. We could not ask for a more loving, caring and understanding big sister for Ru.
Nina wanted a little sister who would learn how to walk and talk. She still watches her friends with their siblings and sees what she wishes she had had with Runa; Someone to play with, teach nonsense to and get infuriated by.
Nina and Runa haven’t had a typical sibling relationship, but Nina has never shown Runa anything but love and affection. On the rare occasions when she has shared what she wishes Runa could do with her, she always instantly follows it up with “But I love her just the way she is.”
Nina works so hard to be inclusive, knows how to make Runa smile and laugh and boasts about what a wonderful little sister she is to everyone. Nina is so resilient, so caring and just the most perfect friend, advocate and sister Runa could ask for. (I am sure time will show Alice to be just as wonderful).
When thinking about what an amazing sister Nina is, I decided to have a conversation with her about Aicardi syndrome and share her experience this awareness day:
What does it mean that Runa has Aicardi syndrome?
“It means that she’s a little bit different from everybody else but I still love her just the way she is”
(Nina, as always, loyally adding the datum that she loves Runa just the way she is.)
What is different about Runa?
“She has a thing called seizures that most people don’t have”
From very early on, even before we had an official diagnosis, we have been honest about Runa’s condition with Nina. As Nina has gotten older, we’ve been able to discuss aspects of epilepsy with her more clearly. We think it’s important that if she sees her sister have a seizure she isn’t scared, understands what is going on and watches us to know what to do.
What happens when Runa has a seizure?
“She maybe can’t move about that much. She can’t move her arms and even if we hold them up, they just fall back down. And her eyes go to the side and sometimes she dribbles a bit”
Most of Runa’s seizures are focal, meaning they start in one part of the brain and she stays conscious throughout. She can display a variety of behaviours. Sometimes it will be a subtle drooping of her mouth and nothing else. Other times she may become very distant and begin twitching and lip smacking.
What do we do when Runa has a seizure?
“We have to look after her and I always try my best to look after her”
As of yet Ru hasn’t needed rescue medication and we’ve only been back to A&E once since diagnosis. We have so far been very lucky that her seizures have been self-resolving.
What’s your favourite thing about Runa?
“My favourite thing is that she’s very fun and she’s very clever- she can do lots of things that other people with Aicardi syndrome can’t do”
Runa is amazing. Given her wide array of brain malformations it is incredible that she is so healthy, strong, interactive, affection and capable of learning (very slow to learn new things, but capable non the less). Nina saying that Runa can do things that others with Aicardi syndrome can’t can sound quite harsh, but it is not my intention to compare her to other children. However, it is natural to see other children with her condition and think how different things could be.
Aicardi syndrome has a wide spectrum. There are many girls who are developmentally far less challenged than Ru; able to walk, talk and interact in more traditional ways. I’d be lying if I said there wasn’t a pang of envy when I see these girls. On the other end of the spectrum there are girls that are considerably more affected by developmental delays. The majority of girls with Aicardi syndrome have significant feeding problems, uncontrollable and relentless seizures and often need intervention to help them breathe. No matter where these girls are on the spectrum, they are incredible, resilient, unique and strong. Runa is perhaps half way along the developmental spectrum and, so far, is very much on the healthy side. It’s never fair to compare your children to anyone else’s, but it helps sometimes for others to see why we celebrate the little victories. Why we get excited about our child, who is almost 3, just learning to do things that a baby under a year could do with ease. Why we are amazed by her sitting for more than thirty seconds or babbling or laughing or putting a spoon in her mouth. Seeing how easily our family could be in more challenging position with the same diagnosis means that we are overwhelmingly grateful for what we have.
What’s Runa’s favourite thing?
“She likes to play with me. I make her laugh and show her funny faces and her toys.”
Runa is a fairly passive person. She loves being around people and watching them. For this reason, nursery has been amazing for her. The Staff at her nursery have told us she gets so much enjoyment from watching her friends play.
Do you know why Runa has Aicardi syndrome?
“There’s a part of her brain missing”
Nina understands that Runa’s brain hasn’t grown in a typical manner. She also understands that our brains are responsible for everything we do, which is why we find Runa so amazing. She still manages to be this happy, wonderful person despite everything that has gone “wrong” in her brain.
How does it make you feel that Ru has Aicardi syndrome?
“A bit sad, but I like that she’s very clever”
Sadness about Runa’s condition isn’t something Nina talks about often. She, like the rest of us, likes to focus on the positive. But she is fully entitled to find it a bit sad sometimes. We all are.
What do you think Runa will be like as she gets older?
“I think she might need a wheelchair. I don’t know if she’ll be able to get a job or have any children. But I can still look after her”
As a family we work very hard to focus on the here and now, but conversations naturally arise about the future. Nina will talk about what she wants to be when she grows up; an astronaut, a doctor…ruler of the world…
She doesn’t ask what Runa will be when she grows up anymore. She understands that Runa will always live with us and is very unlikely to be able to have a job. Having said that, as the world becomes a progressively inclusive place there have been more opportunities for even significantly cognitively impaired adults to volunteer and gain experiences in some work places. Whether or not this will be an option for Ru when she’s an adult is obviously yet to be seen.
Do you think Runa is happy?
“I think she’s mostly happy and I think we’re really lucky to have her”
Runa is a very happy child. She has her moments, particularly when she’s tired or we’re trying to make her do physio, when she gets very grumpy. But the vast majority of the time she is happy. She has a wonderful quality of life, surrounded by people who not only love her but genuinely adore her. She is the most likeable human and everyone who meets her can tell what a character she is. Like Nina says, we are lucky to have her. Not lucky in spite of anything. Not stretching the definition of ‘lucky’. We are just lucky.
How do you think people should treat children with Aicardi syndrome?
“I think they should treat them like they’re perfect just the way they are.”
And there we have it. Nina has summed it up perfectly.
Feel free to share this blog to raise awareness about this rare condition.
Developmentally Quirky 