Kate was born May 17, 2011, a healthy and happy baby. We always thought Kate would grow up to be a strong willed and independent person. However, upon reaching 18 months, we began noticing the effects of this terrible condition. She wasn’t walking on her own at the time, but she was crawling, cruising, saying words and filling in the blanks when I would sing songs, the ABC’s, or count. She knew and could distinguish who was who (Mommy, Dada, Deden (for big brother, Jaden), etc. We had her checked by 2 pediatricians, both of which said the same thing – she will eventually walk in her own time. At about 2 years old, we brought her in again, this time her doctor considered it a red flag and told us to have her screened. We had her screened October 2012 and it showed slight delays in her gross motor skills, fine motor skills and speech but no diagnosis yet. We had her start PT, OT and SP therapies right away. By the time we reached December, she stopped saying her words. From that point on, she began to slowly lose most of the skills that she had developed the first 18 months.
Last December 2014, Kate was finally diagnosed with GM1 Gangliosidosis Type II, a rare disorder that progressively destroys nerve cells in the brain and spinal cord. According to studies, she will begin to lose her ability to see, hear, swallow, stand, talk, etc. Eventually her brain functions will fail and thus her other organs as well.
There are champions for Kate and other kids with similar conditions, who are trying to find a cure, but for now, there is no known cure. Today we just rely on these heroes and other parents to give Kate the best possible chance.
Since her 18th month and to date, no insurance company would take her case, even when no diagnosis was provided, which has left us feeling alone. We created a Facebook page with the hope of showing Kate and others who are facing their own challenges, that they are not alone and that sometimes the IMPOSSIBLE can be POSSIBLE. Since we started the page, over 3,000 people have shown that support. We have also met many brave parents whose kids face similar challenges.
We hope you can join her Facebook page #AWin4Kate and share your inspirational stories, take on a challenge, whether big or small that you have put aside and MAKE IT HAPPEN. Share your wins/accomplishments and we will read your posts to her every day.
If there are people who need wins in their lives, its kids like Kate. Let’s inspire each other to fight even against all odds and help us continue the battle to Win against GM1 and all other rare diseases