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Phase 2 of the 2026 Fundraising Begins! Tuesday April 7th, 2026
Bella continues to have specific needs throughout the year. The cost to these needs per month exceed the amount of Government Funding she receives so once again we are needing to fundraise for her. This year we have added the need to have more yearly funds available for private nursing care when she comes home as Bella today Tuesday April 7th, 2026 will be undergoing a very complex surgery to change the severity of her Dystonia. This is called DBS Surgery. It’s very complex she lives within a Care home Agency that does not have nursing professionals as a matter of fact the Role is classified as Residential Counsellor which is far from the level of care Bella requires. We strive to find her a more suitable care home but this is a complicated matter within the health care sector.
What does Bella have?
Dystonia is a movement disorder that causes the muscles to contract. This can cause twisting motions or other movements that happen repeatedly and that aren't under the person's control.
Bella has General Dystonia.
Dystonia affects different people in different ways. Bella has severe Muscle spasms that affect her torso her arms and her legs leaving her in severe pain which has been getting worse over the past year.
Dystonia is a movement disorder that causes the muscles to contract. This can cause twisting motions or other movements that happen repeatedly and that aren't under the person's control.
When dystonia affects all parts of the body, it's known as general dystonia.
Bella has Symptoms that are General Dystonia which has affected her in the following ways:
Her Neck is affected. When the neck muscles are involved, it's called cervical dystonia. Contractions cause the head to twist and turn to one side. Or the head may pull forward or backward. Cervical dystonia sometimes causes pain.
Her Jaw & tongue were affected. When the muscles of the jaw and tongue are affected, it's called oromandibular dystonia. It can cause slurred speech, drooling, and trouble chewing or swallowing. This type of dystonia can be painful. It often occurs with cervical dystonia or blepharospasm.
Her voice box and vocal cords were affected. When the voice box or vocal cords are affected, it's called laryngeal dystonia. It can cause a strained or whispering voice.
There's no cure for dystonia, but medicines and therapy can improve symptoms. We have opted for Surgery called DBS which is Deep Brain Stimulation. https://www.uhn.ca/Krembil/Clinics/Deep_Brain_Stimulation_Clinic
Once she returns home she will need specialized care. We are not sure how this will look at this time but she will need private nursing care until we can assess her future needs for maybe a more suitable care home.
We also will need funding for a track and a lift as the one she currently has is not safe nor the proper tracking system for her needs.
The needs she currently has and has had for all our fundraising events is to continue attending www.harmonysupport.ca.on she goes 2 times per week. $700 per month.
As well as her weekly physio/massage therapy $1000.00 per month which is 1 time per week currently. She needs 2 times a week but cannot afford this at this time without some funding. As well attaining a young energetic support Staff on the weekend. Usual cost approximately $25 per hour.
We hope that you please consider making a donation here!
Thanks so much!
Elyse Mama Bear & Bella
Last year Video from the 2025 Bucks4Bella Fundraising Event on Oct 4th, 2025 at the Duke in Toronto Ontario. Thanks to Rhett for filming this and editing it!
Thanks to everyone who has donated so far to Bella! Please pass along to Family and Friends who may be able to help support her! We are still in need of some more funds to meet her yearly goal! Thanks!
Video from year 2023.
Adria, also known by her nickname Bella, suffers from MUSCULAR DYSTROPHY and is challenged by a Rare Genetic Mutation called IRF2BPL. This is Muscular Dystrophy https://muscle.ca
Bella is 33 years old now. This disease has STOLEN her ability to walk and talk, as well as prohibiting the use of her arms and hands. She requires 24-hour care. The discovery of this rare genetic mutation was given 5 years ago, following its initial slow progression over 18 years.
Bella suffers from EXTREME ataxia (loss of muscle control) and often gets severe, painful muscle spasms. One small blessing for this pain comes in Botox treatments that she receives every 4 months. The treatment provides alleviation toward the tightness and stiffening of her muscles and is coupled with consistent physiotherapy for
momentum. She benefits from massage / physio 2 times per week from a Licensed Specialized Therapist who comes into her home. The cost for this is approximately $1000.00 per
month.
Many aspects of her life bring Bella deep joy, such as outings and group involvement.
She attends a program https://www.harmonyplace.on.ca Harmony Place Support Services where she enjoys social time with others as well as music therapy, art and outings. The cost per month is $675.00 for 2 days each week for a 4-week period.
The total cost per month for these two items is approximately $1800.00 per month.
We are grateful to be included in some Government funding, yet it is simply insufficient to meet her support. The total provided per year is $8000.00 and with all realistic expenses, this amount is exhausted after 4 months. We need to maintain essential treatments for her ongoing care.
I would like to also hire a Support Worker to take her to an Adaptive Program run by the City of Toronto Parks & Recreation. The program itself is free of cost and provides her with social interaction inclusive programming. The cost for a support worker is typically $20-$25.00 per hour. We fell short last year 2024 in our Fundraising Initiative to hire a Support Staff for these free programs.
Currently, as her Mother, I provide support and direct care 5 days a week as well as all her medical appointments, vendors, all her outings and so much more so that we can enjoy life together!
We raised
$7000.00 last year, which was amazing! These funds were used in addition to the Government portion. We now need to bridge the gap again until next April 2025 when the Government portion is once again available.
I am asking for YOUR support to continue to get Bella's needed services and allow her a sufficient quality of life that keeps it enjoyable for her incredibly special circumstances.
Please consider funding Bella!
ALTERNATIVE to Donate please contact me FB messenger Elyse Douglas
THANK YOU! THANK YOU!!!!
Elyse Mama Bear Warrior!
Toronto, Ontario Canada
Organizer
