Update on Ayla-Jeans Conditions and next steps to find a cure hopefully
11 August 2018We are so overwhelmed by the love and support all our friends and family have shown us. We cannot thank you all enough for the kind messages, sharing our babys story, and doing all that you have.
Every comment we read had us both in tears. I couldn’t help but think we have fucking awesome family and friends, and even strangers! We love you all!
This week we have received some heart-breaking news. We are devastated to say the least and just lost for words. Our poor baby has the worst type of Aicardi-Goutieres Syndrome. (T-REX1). All the experts her specialist has been in contact with have advised that she not do the treatment because they cannot promise that it will work.
Its works like this…
Her body/brain thinks it has a virus (but it doesn’t) and it is attacking itself. With this type it can range from moderate to severe. She is severe and because of this they cannot promise that the treatment is going to be of any help to her. Her specialist has advised that they do not want to do treatment because they don’t want pick/prod and put her through pain with what time she may have left.
We were told that our little girl may not make it to her 2nd Birthday, if that….
We are a part of two support groups. These support groups have parents/caregivers of children with either Aicardi-Goutieres Syndrome or OMS.
This has been massive for the both of us because so many parents/caregiver have a shit load of knowledge. Its so supportive and it honestly gives us hope.
One parent has said…
Remember, a doctor cannot place limits on your child. Your child will be the greatest teacher to you and as difficult and heart-breaking as this is right now (trust me, I remember), this life actually becomes very normal after a while.
She was told her son wouldn’t live past 4 months and he is now 5 years old..
For us its about taking one day at a time and living in the moment. Not thinking about the what ifs…
After all the tears, and no they haven’t stopped and probably wont anytime soon. (Actually crying as I write this)
We have been up until stupid O’clock every day to see what we can find out and how we can help our baby. We’re hoping were on to something as I have had some useful feedback from the support group. A Dr. has been in touch from Philadelphia to recommend that Ayla-Jeans specialist get in touch with her… Fingers crossed something comes out of it…
Life is what you make it. Every day is a blessing for our family and with the support that we have like our son said….
“WE GOT THIS MUMMY AND DADDY”
Love to you all once again, and thank you all for keeping positive for our baby because we sure as hell ain’t letting it bring us down! 💪🙏💕