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2019 Family Hopes and Dreams

We asked our Facebook community what hopes and dreams they have for their family in 2019. Here is what they shared:


Randi: live her best quality of life possible!

Dawn: In the new year I hope my loved one with CDKL5 has the best of health and continues to be able to navigate the stairs by himself ?

Louise: Give us just what he has been doing!! I just want him to keep getting stronger and continue to fight his fight!!! Want him to keep smiling, laughing and loving!!! My biggest wish is to hear his voice!!! It’s my New Years wish now and forever!!!!

April: In the new year I hope my loved one with CDD will continue to get stronger and walk.

Kara: In the new year, I hope that he continues to be healthy, happy, and know that he is loved beyond measure❤️

Melissa Hilt Have as much growth in physical strength as she has given the rest of us in spiritual and emotional strength.

Sandy: Be seizure free again. I did not cherish the 9 years seizure free enough.

Marissa: I’d like G and I to have a real art show – like make 10-20 larger paintings and display them in a local gallery or something. That is my goal! If anyone knows of any gallery space… ? Art for Hope/Love/Cure

Karen: Our focus for 2019 will be on communication. It has been a challenge to find a device that is portable and can meet Samantha’s needs. I’m determined to find a way she can communicate her needs in the car and in her chair when in public. She has plenty to say … but needs tools to be able to say it!?

Monica: I hope to get being closer to buying a home and I dream of a day or two of doing nothing … it’s been a few years.

Kristin: We’re focusing on communication here too. We’re just starting our AAC journey and hope to pick the correct eye gaze device for Avery (we’ve trialed 2 so far, with one more to look at). Then comes the training of all those who care for/teach her. We want to be sure that she has the opportunity to tell us what’s on her mind!

Amanda: I will be stepping up low-tech communication options, at home. Ava does great on a Tobii Dynavox i12, but it is hard to have consistent access to eye-gaze communication, while ambulating. She can really rock a whiteboard and does fantastic using a power-link to operate everyday appliances (like turn on fan, blend her food, etc.)!