Help Willow get into intensive therapy and equipment

Hi my name is Monica and I am Willows Nonnie, me her mom Sarina and Papa T (Tony) are excited for the opportunity of getting into another intensive therapy with On the Fly DMI in 2025 ,she did so well in her first one in January it was hard but she did great ( video posted is from her previous intensive) i tried posting pictures and video, unfortunately i can either do one or the other . It was all thanks to your donations . We are also looking locally for DMI therapy as well, local one would be great and hopefully this will be the one of many as we find special programs that may help our girl. These therapies are not usually covered by insurance unfortunately especially by Medicaid.

Watching her grow and learn new things is so exciting and consistency is so important with her disorder.

Now a little about Willow and Stxbp1

Willow was born with a genetic disorder Stxbp1 which is a gene that affects brain development and neurotransmitter signaling. This can result in epilepsy, intellectual disability, developmental delays, movement disorders and other difficulties.

She had seizures as an infant and was on strong medication. Mom and dad had to give her shots daily. I know as young parents you dream of the things your child will accomplish but for Willow those accomplishments will be different. We are glad we are past those days and seizures have stopped at least we think ,we're always recording questionable things she does. We often wonder what will the future hold? The challenges will still continue and we won't stop trying . Her Medicaid was halted and took 8 months to get reactivated so therapies except for school were put on hold and we did what we could at home. She had speech, occupational and physical therapy and has worked hard to get to where she is now. She doesn't speak but is learning to use a communication device, she doesn't stand or walk but has use of her legs, we are hopeful because of her situation that these special therapies could benefit her. . She has also outgrown her gait trainer ,we are working with a foundation and hopefully that will be taken care of . She will need an adaptive stroller ,the girl is getting long. I was able to connect with others at The Stxbp1 summit In July and have a few that were suggested. I'm hoping she will be able to get one by next year and praying Medicaid will cover that.

We have so many unknowns since this disorder seems to affect each person differently.

Do we hope one day we will hear her say some words in her sweet voice ,yes we do.

Do we hope she may be mobile even with some assistance, yes we do.

She has such a joyful spirit no matter what is going on, she's curious and loves being outdoors , loves the water and music.

She is a blessing and has changed our lives, we are Seeing things differently and we are all learning together.

We hope you can find it in your hearts to donate and be one of Willows Warriors. We love and appreciate you all.