Gemma was born seemingly perfect. While she may have had slight delays in her early milestones compared to her siblings, she wasn’t too far behind. She was happy, healthy and her pediatrician was never concerned until we noticed a shift in behavior and increasing delays. When Gemma turned a year old, she still wasn’t crawling or able to push herself up to sit. She began to lose eye contact and interest in her toys and books that she loved before. Over time, Gemma lost her ability to grasp objects, hold her own cup, use a spoon and so much more. She has lost her ability to speak the few words she had learned. She also has a hard time regulating her body, and as a result, you may see her constant hand-mouthing, teeth grinding, breath holding, hair pulling or other uncontrolled movements. As time goes on, we try not to think about the possibility of other symptoms arising. It is difficult to see another birthday pass by and not see her play as she should, sing and speak as she should. Knowing she is stuck in a body that isn’t able to cooperate with her mind. We love Gemma just as she is, but we will continue to fight for a cure because we know that a cure is possible.
Gemma was diagnosed with Rett Syndrome on March 25, 2020. Our hearts were crushed as her neurologist delivered the news to us over a zoom call, as the world around us locked down due to the pandemic. The life we had known and hoped for had immediately changed. We felt immense sadness and anger, but we also felt a fire ignited to fight for our girl. To help her in any and every possible way. For her second birthday, we created a birthday fundraiser to contribute to the best possible gift for Gemma and so many others with Rett Syndrome, a cure. We hope to continue this tradition until a cure is available.
We are so proud of all that Gemma has accomplished in this past year. Despite her many challenges, she is capable of so much. She has worked so hard in all her therapies, crushing many goals, especially in physical therapy. She is able to walk up and down our kitchen step now, climb onto the sofa, and has gained so much strength and balance. Gemma absolutely loves music. Even though she isn’t able to speak, she has no trouble communicating her need for a certain album or song to be played or letting us know when she needs a snack or a preferred toy. Gemma seems to have an ability to appreciate life beyond our five senses. She can really soak up the wonders of the present moment. Despite the frustration of not being able to tell us what she wants, despite her constant falls and bumps and bruises, she wakes up happy every morning, ready to take on another day.
We will celebrate Gemma this year on her third birthday, even though it isn’t how we envisioned our life with her. We will keep showing up for her and making an effort to help make a cure a reality for our Gem and for all the other gems living with this condition.
We are so grateful for every contribution, big or small. It is the greatest gift we could imagine.
|Rick Dickinson||$100.00||June 16, 2021|
|SG Plastering||$1,000.00||June 16, 2021|
|Sharon Gates Grundstrom||$50.00||June 15, 2021|
|Sylvia Asaro||$50.00||June 15, 2021|
|Anonymous||$50.00||June 14, 2021|
|Marialisa Grassa||$25.00||June 14, 2021|
|Anonymous||$100.00||June 14, 2021|
|Jonathan Ritchison||$100.00||June 13, 2021|
|Vicky Trask||$100.00||June 12, 2021|
|christopher grassa||$100.00||June 12, 2021|
|Susan Lucas||$100.00||June 12, 2021|
|Cristina Asaro||$100.00||June 11, 2021|
|Briel Hernandez||$100.00||June 11, 2021|
|James Alberts||$50.00||June 11, 2021|
|Justin LaSalle||$1,000.00||June 11, 2021|
|Maria and Paul Crimi||$30.00||June 11, 2021|
|Kim Phillips||$100.00||June 11, 2021|
|Angela Zangari||$100.00||June 11, 2021|
|Anonymous||$100.00||June 11, 2021|
|Anonymous||$100.00||June 11, 2021|
|Eliana & Luca La Salle||$88.00||June 11, 2021|
|Nuccia Asaro||$200.00||June 11, 2021|
|Russel Wurts||$250.00||June 11, 2021|
|Rachel Falk||$25.00||June 10, 2021|
|Leslie Smithwick||$100.00||June 10, 2021|
|Angela DELUCA||$100.00||June 10, 2021|
|Holly Alves||$25.00||June 10, 2021|
|Dan LaSalle||$250.00||June 10, 2021|
|Frank B La Salle||$1,000.00||June 10, 2021|
|Darin Blue||$100.00||June 10, 2021|
|Hector Arias||$250.00||June 10, 2021|
|Kristen Sacco||$100.00||June 10, 2021|