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  • Juanita Simpson

We made it to 1!

WOW! Well, here we are.. 1 year earth side.. Soooooo many emotions from one extreme to another and celebrations too these past few weeks! On multiple occasions we weren't sure if Ashy would even make it this far, we are thankful for everyday we have her. Ashy has officially marked 1 year seizure free. For the past 6 months she has been self weaning off her Keppra medication and this week we meet with Neurology to put a plan in place to bring her off her medication & into remission, which for a child with STX is a huge milestone. Although it doesn't mean shes in the all clear as 95% of STXers seizures cannot be controlled by medication, so we are lucky that Ashanas have been controlled and that we have gotten to come this far. In true Ashana style she is hitting her inch-stones better then we expected.. Despite her significant hypertonia she is doing so well with sitting unassisted and now able to do so playing with toys for minutes at a time.. She has also learnt to throw a ball which is a milestone she has hit right on time for her age (YAY).

When someone tells you your child will be non verbal its a hard thing to get your head around, i wondered how the heck my daughter will tell me something is wrong? How will i know what she wants & needs? The realisation hit that she will never get to tell me she loves me. . But for those of you who have never seen a ''non verbal'' child communicate, its truly beautiful! Every morning Ashana babbles from her cot to let me know shes awake, when i pick her up she wraps her arms around me and cuddles into my neck, followed by a kiss or 5 on the cheek.. Thats her way of saying Good Morning ... She tries to lift her arms up to want up. She has learnt to shake her head for no, kicks her legs for yes and when you do something she loves she ''oooooos'' followed by a kiss and cuddle to say thank you. We are all learning to baby sign which is amazing, It truly is beautiful to see her communicate in her own little way.

We share Ashanas journey & our struggles publicly because we want to help get STX & AXD out there.. We want to help make a difference and one day find a cure. The people we have met through this are incredible to say the least. From the people that have backed us with support from day 1 to the fellow life long friends we have met that have AXD or are parents to a child with AXD or STX, I cannot help but admire them. I count us one of the lucky ones that got Ashanas diagnosis early so we could start her therapies straight away. Lately i have met some amazing humans who weren't that lucky, some that have lived with these chronic conditions most of there life but never knew what was going on. Recently we met Scotty who is 38 living with Adult Alexander Disease, the way that him and many others deal with life - never knowing what tomorrow brings yet get up day after day and live there life... These people inspire ones like me to keep going, to take things one day at a time, to enjoy the moments life gives you. People often comment to me that we are so 'strong & brave' for what we go through. I believe that these ones like Scotty & all the other families not knowing what tomorrow brings for them as Adutls - not knowing every time they get sick if its the flu or if its AXD taking control, not knowing if they will have the ability to walk next week... These ones are the strong and brave ones.. These people are the real heroes in my eyes..

Much Love. xx

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