Ella Bond’s Fight Against Rett Syndrome

As many of you know Ella Bond, McKenna & Jared Bond’s daughter is battling Rett Syndrome.

Ella was born a healthy baby girl but around 6 months of age her parents noticed she was not meeting developmental milestones. She continued to have developmental delays as her parents searched for answers and started her in therapy. After almost a year of looking for answers, on April 5th, 2023 her parents got her diagnosis, Rett Syndrome. That day will always be one of the worst days of their lives. Since then they have educated themselves and fought for Ella’s future by being prepared to give her the best life possible despite Rett Syndrome and all its effects.

Rett Syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of life. Rett particularly affects speech, purposeful hand use, and coordination, leaving individuals understanding more than they can communicate. Caused by a gene mutation, Rett is first recognized in infancy and occurs in girls and even rarely in boys. Neither McKenna or Jared are carriers for Rett Syndrome. This occurred sporadically when Ella was conceived.

You can read more about RS here: https://www.rettsyndrome.org/

Needless to say this is going to be a lifetime journey for the Bond family. With that said, I wanted to start a donation to help with Ella’s anticipated medical expenses. Ella will need 24/7 care and medical attention for the rest of her life and no one is ever prepared for something of this nature.

These are some costs that the Bond family anticipates and this is what your donation would go towards:

1. AAC Device (Communication Device)- $1,000+

2. Therapy expenses - $2,000.00+

3. Therapy Equipment for PT, OT, & SLP - $10,000+

4. Travel Expenses - $10,000+

5.Adaptive Home Medical Equipment - $50,000+

7. Specialized caregiving - $100,000+ 8.Medications

It is hard to say how much insurance will cover but many of these things will not be covered or covered fully.

To know Ella is to love Ella. If you have been around her you know what a joy she is to this world. Her smile radiates and she can light up any room with her belly laugh. Her hugs and kisses are the best.

I hope with your help we can lessen the financial stress they are facing and allow them to focus on Ella and their families quality of life and giving Ella the best life possible. This fundraising campaign will hopefully grant them more peace of mind as they help Ella navigate this lifelong path.

Thank you for considering to donate or help in anyway. No act is to small or goes unnoticed, the Bond Family appreciates you being here with them on this journey.