Hattie Strong

Hi there! As many of you already know Hattie was born missing her corpus callosum in her brain and when she was four weeks old she was diagnosed with Aicardi Syndrome.

Aicardi is extremely rare, only 4000 people worldwide and 936 in the US have this. It is a non-hereditary genetic disorder that they believe is on the X chromosome. Doctors have not been able to locate the exact gene that gets mutated resulting in Aicardi so there is very little known about it. This syndrome has an exceptionally large range in its effect.

Hattie has had a rough go of it thus far but man is she a fighter! We have been unable to obtain complete control of her seizures but we are hopeful we will be able to soon. One of the symptoms of aicardi is these seizures, Hattie can have anywhere from 12-500 seizures a day. It is these seizures that have caused Hattie to be developmentally delayed.

We work with a occupational therapist weekly and then implement those exercises into her daily life. She is getting stronger everyday and currently we are really working on her head control and trunk strength. Hattie has a hard time holding her head up on her own and she is unable to sit up on her own. She wears a supportive vest everyday to help give her trunk support so she can focus on just her head.

Due to the fact that she cannot sit up without assistance we struggle to find places for her to hangout around the house. We recently found out about the Special Tomato chair which will be a great place for Hattie to sit. It will also allow her to sit at the table with us at restaurants and other public places.

Unfortunately, along with all the emotions of the last year we have found ourselves unable to get insurance to cover many of the things that our Hattie needs. This chair is just the first of many devices that she will need to help her get to her full potential.

As of now, Hattie is not grabbing things or too interested in any toys. She has so many toys that sit in her closet unused at this point. We are asking that instead of gifts or toys for Hattie that you use what money you would spend on a gift to help us get her this chair.

Anything helps! We love and appreciate all of you and the support you have given us this year.