We are still waiting for a formal diagnosis for my baby girl. She is just over one years old. She has a damaged cerebellum which is smaller than it should be.
I am so scared for the future, and wish we had a chrystal ball for me to be able to see if she will be able to sit unaided, crawl or even walk in the future. In the last few months, she has started to learn to be able to roll from her back to her side and then onto her front but she can't do it the other way, although i am hopefull that she will learn as she couldn't roll at all a few months ago. Its just so hard, i still don't understand why this has happened, and as i say we are waiting for the first set of tests to come back. They are looking at a whole raft of things but the physio's say she has cerebeller ataxia (just because of the damage and the smallness - i understand its a bucket term and one where you have to look at the reason for it)
Its just so hard waiting, today is a down day, i can't help feeling upset and just wish my little girl was "normal" and feel so scared for the future and wondering if she will have a good life or not. I don't want her to feel sad but think it will be inevitable as she won't be able to do as much as other kids. I still don't know how much she is cognitively effected. "Normal" kids, like my friend who just visited with her child are already speaking and able to understand things whereas Ella can't. Oh its all just so difficult.
First of all I am so sorry for you. I know how your feeling. I have 3 of my own children. And Two grandchildren. My Ataxia is hereditary. So that means any one or all the 5 kids could get it. My kind hits later in years. If you keep showing your daughter love and acceptance. She will be okay. There's going to be a lot of down days. She is going to be sad. And so are you. But I guess we realize that doesn't do much. Your daughter will be normal to you and her. Because that will be the only way of life she knows. Difficult yes. But you will get threw it! I didnt mean to step out of line.
I just had a baby recently, she's perfectly healthy. however isn't hereditary. Whatever the outcome God has His purpose and we all play a part, don't count her out she is special after all. Hope this helps ease your worry a bit
Just think of all the time and attention you will be able to give her.That is the most important thing of all.
You are truly blessed to have your baby girl! I am an adult with ataxia, that started later in life. I don't know how you feel. Although, because I have two grown children, I do know you want nothing but the best for the best for your child/children When they're ill or unhappy, you wish you could take that on yourself and make everything alright for them. I do agree with what others have said, you're love, acceptance and time is the most important thing for your child! Hopefully you'll hear from other moms that are dealing with a child with ataxia. Your baby will be a shining star, as your love will see her through!!! Hugs to you..., ;o)
Hi. My son is nearly 3 (3in mar) last apr he was diagnosed with sca7. One of the rarer forms of ataxia. He developed normally until about 18 months. He went from walking, talking sitting and eating normally to now not being able to do any of it. He is also going blind - just to top it all off. He is fed jejunaly as his gut is not working properly . it is very devastating but I have just decided not to dwell on it but to make the most of our time with him. Giving him all the opportunities we can whilst ensuring he has the best quality of life possible. Sca7 is hereditary and it was a double blow as it transpires my husband has it too and he will end up the same as my son. If you want to talk further please Message me and I can perhaps help you with any questions. Sending hugs xx