Support Zelda and her family

I do have a very hard update to provide to all of you who support this beautiful family that Zelda has passed away surrounded by her loving family on February 28th, 2024. Zelda was a fighter to the end and she couldn’t have been more supported by her loving parents Nicole and Mackie.

As they navigate this very hard time that no parent wants to ever imagine, I was hoping to provide them with the love and support by taking one thing off their plate (literally) the dreaded adult question …what’s for supper?!

please see the link for the meal train page if you would like to offer a meal made with love and comfort to help Nicole and Mackie through this difficult time.

https://mealtrain.com/2zy5w8

I have decided to open a fundraiser for my beautiful friends Nicole, Mack & Zelda who have been faced with more medical challenges with their sweet little Zelda than anyone I know!!

Nicole and Mack are the most loving caring parents to their sweet girl Zelda. Zelda’s life has been hard from the very beginning with her first seizure happening hours after birth.

Zelda's condition is called Adenylosuccinate lyase deficiency, or ADSL deficiency. This condition is very rare, about 1 in 1.25 million. ADSL deficiency is a neurological condition causing brain dysfunction, for Zelda this means seizures, dystonia (involuntary muscle contractions), infantile spasms (rare but serious form of epilepsy), neurological irritability and low muscle tone. Because of this Zelda is delayed in all areas of development. Her developmental age is that of a newborn. We have no idea how much time we have with her, but we know it is limited.

Zelda will always need help with all of her essential needs. She eats and receives medications through a feeding tube in her nose, has a range of physical exercises we do throughout the day, as well as vision therapy due to cortical vision impairment. She requires medications several times throughout the day from 6am - 11pm. Zelda requires constant attention and monitoring because she struggled with swallowing and this requires suctioning frequently to help her out with breathing.

As her parents, Nicole & Mack have been thrown into a completely different world, a medical parent world. When most parents worry about wake windows, starting solids or sleeping through the night, they have been thrown a whole different number of challenges. All of which Mack and Nicole have exceeded everyone’s expectation and taken the challenges in stride to provide the most amazing life for Zelda. Even when things are hard they always show Zelda the most amount of love and affection for their sweet little girl. It really is the most wonderful thing to see this beautiful family doing everything they are with Zelda.

Nicole and Mack are absolutely expert in Zelda’s care. They learned about maintenance medications, rescue medications (which being able to respond appropriately and calmly is absolutely crucial!!), how to insert and use a feeding tube, physical and occupational therapy, how to use a wheel chair and standing frame, how to deep suction, and endless medical terminology.

Zelda is a happy girl who loves snuggles, stories, music and her puppies. She loves the color red and is currently learning to focus on yellow as well. She brings so much joy to everyone she meets, and is always surrounded by so much love. You can feel the energy in a room light up when she arrives.

As a result of Zelda’s complex medical care and Nicole needing to be caring for Zelda and the amount of medical appointments and emergencies- Nicole has struggled to find flexible employment that allows her to take care of Zelda.

Even though all of this stuff is sooo hard and none of us can even begin to imagine the daily struggles and fears that her parents face every day. Nicole still says “Zelda is the best thing that has ever happened to us. She has taught us so much patience and understanding. We have grown so strong and resilient because she shows us how strong and resilient she is. And through all of the struggles we have been given so much love.”

Any donations and sharing of our go fund me will be deeply appreciated to cover uninsured medical expenses, supplement Nicole’s lost income as well as a medical van which will be necessary as Zelda grows bigger!

Thank you from the bottom of our hearts for supporting this beautiful family!