Alice’s World of Wonder: Give her Hope

Our precious little Alice is almost 4.5 years old. She lives with an ultra rare CASK gene disorder. There are just 170 (it is that rare) known cases worldwide. We would highly appreciate it if you could help Alice receive the intensive treatment she urgently needs!

 

Completely unaware that we had a child with a serious disability, it was not easy for us to start searching for answers to her delays at 12 months of age and to finally receive a heartbreaking diagnosis at 20 months. CASK gene plays a crucial role in brain development and communication among neurons and when it becomes non-functional there are serious consequences. Affected boys do not usually survive and girls have to overcome a whole array of physical and cognitive limitations. Doctors told us she wouldn’t be able to walk, talk or use her hands and might need a G-tube for feeding among many other things. Well, they didn’t know our girl! Despite the fact she is facing extreme challenges in almost all aspects of her life and also has an Autism Spectrum Disorder, she has already proven the doctors wrong. Alice can now take a few steps with assistance! She also learned to crawl! She is trying to feed herself! And she is learning to communicate! We see an enormous potential in our little fighter and we are absolutely sure she can achieve much more with the right support!

 

Researchers at Virginia Tech’s Neuromotor Research Clinic are among a few specialists in the world searching for cure of CASK gene disorders. They have demonstrated that intensive bursts of therapies that promote neurorehabilitation work wonders for children with Alice’s specific condition and help improve functional skills and independence. We already contacted them and would love Alice to participate in this treatment program in Virginia as soon as we can pay for it.

 

Another highly regarded institution that helped many of our CASK kids achieve astonishing results is NAPA (Neurological and Physical Abilitation) Center in the US. We are in contact with them too and hope to enroll Alice in their intensive program as soon as funds become available. Both centers offer high quality evidence-based intensive therapies that target neuroplasticity (the brain’s ability to learn and rewire itself) and are not available locally.

 

Unfortunately, we are unable to afford the cost of these intensive therapies that are essential for Alice to achieve her milestones. Therefore we are reaching out to you. With your help we are hoping to offer our beloved daughter the opportunity to achieve her fullest potential.  Our primary goals would be to help her develop balance and coordination (the toughest areas to target as they don't seem to respond to traditional intervention and are  necessary for walking), help her improve chewing skills to avoid a feeding tube (still continues to be among recommended procedures), and  finally help her develop fine motor skills or the use of her hands needed for self-feeding, self-care and alternative communication. The brain’s plasticity is much greater during the first few years of a child’s s life than it will ever be again. So right now Alice has the best chance of becoming more independent and having a better quality of life as an adult.

Alice is the light of our lives and the kindest, most curious and hardworking kid we know. She has an amazing personality and never gives up. Oh, and those who met her say that her smile can light up any room and is hard to forget. Alice has touched so many lives already and we hope she will continue to be an inspiration to many more people. We know these are difficult times for everyone, but Alice can’t wait and we can’t do it alone. Any amount that you could contribute would be greatly appreciated. Please feel free to message me personally if there is any other way you would like to help or if you want to connect with us! Also please share Alice’s story. We need as much support as possible. And your love and prayers would mean a lot to us!

 All money raised will go towards paying for the therapy.

Thank you from the bottom of our hearts!!!

 

Follow Alice’s journey at Alice’s World of Wonder

 

XOXO

 

Roxanne, Alexander and Alice