Fight for Avery Vlogiannitis

https://globalnews.ca/news/9063883/ontario-child-rare-genetic-disease-help/amp/

I’m Jonelle, Avery’s Mom. My daughter is disappearing right in front of me.

It is agony knowing that every day, instead of watching her grow and learn, I have watched her regress, become wheelchair-bound and quickly lose functionality of her body.

Avery was born on October 30, 2018, and she was (and is) absolutely perfect. She was such a happy and easy-to-care-for baby, but around 4-5 months old, we started to notice that Avery was missing some of her milestones. We immediately began daily Physiotherapy, Occupational & Speech therapy sessions. Her eyesight also began to fail and she was diagnosed with Septo-Optic Dysplasia which is severely distorted vision in both her eyes because of underdeveloped optic nerves, which leads to blindness. With intense therapy sessions, Avery began to slowly progress physically and she started achieving her milestones. We thought the worst was behind us; however, it was just beginning.

In 2021, after many doctors’ appointments, therapist appointments, MRIs, bloodwork and genetic testing, Avery was diagnosed with Spinocerebellar Ataxia type 28 (SCA28), which is an incredibly rare, neurodegenerative genetic disease.

SCA28 is a degenerative condition for which there is no medicine to correct it, no gene therapy, and no cure. It causes loss of fine and gross motor skills, loss of coordination, severe spastic movements, and optic nerve degeneration, among many other symptoms. The onset of these symptoms does not start until adulthood and often takes decades to progress…we were told. THAT IS NOT WHAT IS HAPPENING TO AVERY.

The onset of this terrible disease started for her at 18 months old and has been progressing at an alarming rate. In the past six months alone, I have watched Avery lose her ability to walk and remain seated on her own.

She can no longer hold up any parts of her body on her own, including her neck. At 3 1/2 years old, her body is completely floppy (like a newborn baby). She is wheelchair-bound. She has lost all her fine and gross motor skills and can no longer do things like hold or play with any of her toys or brush her teeth.

In April 2022, she developed problems eating orally and had surgery for a feeding tube that goes directly into her stomach. Since Avery was six months old, I have taken great pride in cooking balanced and healthy meals for her every day, and I no longer have that privilege. She is strictly on toddler formula and will be for the rest of her life. She is now almost completely blind and does not speak, except for two words (Mama and Dada).

Watching my daughter change from a happy, well-functioning toddler to a toddler who is 100% dependent on us every minute of the day is heartbreaking. Within months she went from cruising around the family room on her own to being severely disabled.

The worst part is that it never occurred to me that Avery’s disease would attack the “inside” of her body. It has already started shutting down her organs.

Within two months of getting her feeding tube, her stomach stopped working. In June 2022, she had to have that tube replaced with one that bypasses her stomach and deposits the formula into her small intestines. Right now, this is the only way that she can get any nutrition.

Currently (July 2022), her intestines are no longer functioning properly, and she takes motility drugs and laxatives daily to move the formula through her small intestines.

As weeks go by, these medications are less and less effective and the frequency that she vomits every day is increasing. She also takes potent neurological medications daily to minimize her involuntary, spastic movements.

In June 2022, her team of 9 specialists at Sick Kids Hospital gave us devastating news: they told us to make each day of Avery’s life as great as we can because she does not have a lot of time left. Her lungs will most likely be the organ that fails next, and after that, it will most likely be her heart. We are completely devastated and honestly still cannot fully process those words.

Avery’s father, Tony, and I are both currently not working because Avery’s care is completely a 24-hour job and it takes both of our efforts to help her every day, the best we can.

Our only path forward is to try things that may help slow down the disease or possibly prolong her life. There is no cure, yet. WE WILL NOT SIT BACK AND WATCH HER DECLINE FURTHER when there is something that we can do.

Our goal is to raise $250,000 by the end of this year to help with:

HOW YOU CAN HELP TODAY:

1. Donate ANY amount you can; every dollar is greatly appreciated.

2. Share on all social media with the hashtag #FIGHTFORAVERY.

3. Email this Go Fund Me link with these steps to everyone you know.

4. Leverage any avenue you have to make this go viral.

WHERE IS YOUR MONEY GOING?

Every penny of the money raised will go towards improving the quality of Avery’s life, specifically with medical equipment. Also, any costs associated with travelling to visit doctors outside of Sick Kids Hospital that may be able to help her.

We are racing against time to help Avery and we will not stop.

Thank you kindly for your love and support for our sweet little girl.

Jonelle & Tony Vlogiannitis