Amil or Millie as we call her; is 15 years old and is our families little Super Woman. She’s had to endure and overcome so much. Millie’s courageous fight began with her being born 28 weeks premature weighing only 4lbs 2oz. She immediately started showing the same ear markers of Type 1 Diabetes that both her mother and sister were living with. Millie’s skull was formed and fused incorrectly while inside the womb. She was diagnosed with Craniosynostosis, which was placing pressure around her brain causing extreme pain to the point of having daily bouts of inconsolable crying. In 2011 Amil was able to have reconstructive surgery to increase space in her skull and stop the pain she had been enduring over years. All the while we were trying to figure out why Millie was missing her growth milestones. We allowed our families blood to be tested in order to possibly find a genomic answer; this delicate process took about 4 or 5 years.
After years of testing and waiting it was finally determined that Millie had a very rare gene mutation. It had been called AXL3 or Bainbridge Roper Syndrome. A syndrome characterized by psychomotor retardation, feeding problems, severe postnatal growth retardation in some patients, arched eyebrows, anteverted nares, and ulnar deviation of the hands. Therefore, because of this syndrome Millie has never been able to walk, talk or care for herself. Yet, her extensive daily needs have never stopped us as a family from making a connection to her world. We all decided to understand her language to show her we are here, and we see Millie’s love too.
Millie is a little lady who is still growing and loves exploring the world around her. She loves listening to music, and like any red-blooded teenager she loves to get out of the house and take in long rides. Having a stair lift will help us as a family, by granting easier access to getting Millie out and around the community. Creating a much-needed feeling of normalcy.
This device will also allow us to put less strain on her body when carrying her up and down our stairs to her bedroom. As well as increase the level of safety when transferring her from point A to B. It would be something that not only Millie would enjoy but also as a unit it will put our minds at ease. Knowing she is no longer in a potentially dangerous trip and fall situation. Our main goal as a family has always been to feel secure in our home while enjoying our time together.
If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate
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