Today is Disorders of the corpus collosum awareness day! (DoCC) Today is the perfect day to learn all about the corpus collosum and what happens when things develop in a quirky manner. So firstly, a reminder of what the corpus collosum is…
A DoCC can include agenesis (complete or partial) of the corpus collosum. This is a key diagnostic feature of Aicardi syndrome.
Through this blog I share a lot about my little Aicardi warrior and I like to think that I’m doing my part to raise awareness about Aicardi syndrome (and in turn, one condition associated with DoCC).
Runa is strong, beautiful and inspiring. Despite missing part of her brain, having malformations throughout other parts, facing seizures and lots of hard core medication, she continues to learn at her own pace. She smiles often, sits occasionally and she is getting better at chewing her food every day. She is affectionate and babbles happily to anyone who’ll pay attention to her. She is loving and loved.
Today I would really like to share the experience of two other families who have daughters with Aicardi syndrome. They have kindly shared their stories with me.
Fynleigh lives over the pond in the States and here’s what here parents had to say:
“Fyn was born without a corpus collosum. She had her first seizure at five days old. She was also born with three benign brain tumors. She was diagnosed with Aicardi at 18 months old. Two of her three tumors have been removed. One of them ballooned to the size of a tangerine. It was one third the size of her little skull. Fyn needed six blood transfusions to survive the surgery. On the 22nd of July she has an MRI to determine if we need a third brain surgery.
Below is our favourite picture of Fynleigh. She was sitting all by herself for about seven months. The seizures, for now, are under control.
Maybe we can get this ability back. Growth, like everything else, is a challenge for the Aicardi girls.”
Evie lives over in Ireland and her mum shared this about their life together:
“One thing that I think it is difficult for other people to understand is just how absolutely heartbreaking and terrifying seizures are. When you are holding your daughter and whispering to her that everything is ok knowing that you have no idea if everything is ok, it’s truly heart wrenching. They are without a doubt the most horrible thing. You think you have the medication right and you have some control and then just out of nowhere they appear again. Sometimes you can go for days without seeing a seizure type and you get your hopes up just to have them completely dashed. It makes life extremely frightening for the entire family.
When we got Evie’s diagnosis, we decided that day that we would always remain positive and surround her with good people who had the same attitude to us. We said on that day that we have all the time in the world for Evie and no one is in a hurry where she is concerned. We never say that she can’t do something we just say that she doesn’t do it yet. Her diagnosis is scary as we were told that basically no one can say what the future holds. Instead of letting this overwhelm us, we focus on small things and finding joy in the everyday things that other people might take for granted. Evie’s bath time is the highlight of our day, her swimming lessons the highlight of our week. The first time she went on a swing on her own we were all in tears (apart from her – she was laughing!).
We have learned to live in the moment and instead of worrying about what tomorrow brings we focus on enjoying everything we have today. Of course, Evie makes this easy as she is always such a joy to be around.
Something else we learned was how lucky we are to be surrounded by family and friends who love us and who love Evie and who are willing to drop everything to help us out. I think that our relationships with our friends and family have been so strengthened by Evie. She just brings everyone together and brings out the best in people.
Every day I am so proud of Evie. She fights more than anyone I know and makes everyone laugh more than anyone. She is the light of our lives and we are so blessed to have her.”
Aicardi Syndrome is challenging. As you can tell, we all have our highs and lows, but what is also apparent is how much we, as parents, adore and love our daughters. We will advocate for them every step of the way, just as parents of other children with a DoCC will.
As always, sharing a blog and raising awareness here and there are only small steps. But these
small steps lead the way to more people recognising and understanding the conditions. This can lead to more research and a better quality of life for our children and for children in the future who are born with these conditions.
Thank you to Evie and Fynleigh’s families for sharing their story and thank you readers for your support.
More information a about Agenesis of the corpus collosum (ACC) can be found here :https://nodcc.org/corpus-callosum-disorders/