Go Eugenie Go! Help Eug live her best life.
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Hello!
Welcome to our fundraising page :) I am Eugenie's Mom, Angela. And I'm here to share Eug's story and tell you a bit about the situation she is in, in the hopes that you can help improve her quality of life. Our goal is to provide my girl with the best quality of life possible.
(UPDATE: May 18, 2024: We amassed quite a bit of money in a short period of time when I began this fundraiser in Sept '23, so I "paused" it for awhile, not wanting to accumulate too many funds at once. We have since expended that money on physiotherapy and activities, as well as "boot camp" sessions with Eug's longtime Conductor Therapist. So I am "unpausing" this fundraiser so that Eug can continue to receive the much needed supports she requires to live her best life. Thank you!)
Eugenie will be 23 years old this coming August. She was born with Cerebral Palsy, has a seizure disorder, and has a severe intellectual disability. She requires assistance with every aspect of daily living, 24/7 support. She is non-verbal and cannot walk independently. I have been a single Mom to Eugenie for the past 18 years. And she is the most amazing kid/young lady! She is an absolute blast and guaranteed to make you smile... she really is a lot of FUN!
For many years I fundraised to take Eugenie away to therapy camps, and we would be away from home together for 15 weeks every year. That therapy taught my girl how to sit up on her own at the age of 4 1/2, she learned how to help feed herself, how to bear weight and take steps with a walker, it strengthened her core muscles, improved her balance and coordination and she was very proud of her accomplishments. And I was a proud Mommy! And it wasn't just Eugenie that learned things over those years, the knowledge I gained has been instrumental in supporting my girl to the best of my ability all these years. But like the old adage states, "if you don't use it you lose it"... in order for Eugenie to maintain her strength and abilities, she needs to utilize her abilities, she needs regular exercise. We all do, and it's our right.
I have had to fight for my daughter’s rights and needs every day since the day that kid was born… I have fundraised somewhere in the vicinity of $200,000 over Eug’s lifetime, to attend therapy and camp sessions, to purchase a wheelchair accessible van, modified tricycles, equipment, all thanks to our amazing friends, family, neighbours, community, and even perfect strangers.
And here I am again, appealing for assistance to help support Eugenie’s needs...
For the past 2 1/2 years, Eug has been living with 2 other young ladies in a residential group home owned and operated by a local agency, and funded by the Ministry of Children and Community Social Services. I just couldn't do it anymore. It was the most gut-wrenching decision I've ever had to make. I was completely burnt out. I thought I was doing the right thing... but it seems as though I was given a lot of "misinformation".
The agency has recently adopted a "zero lift" policy, so staff are unable to get Eugenie onto her trike, into her swing, or do much in the way of physiotherapy. This fundraiser appeal is strictly for assistance with getting Eugenie the physical activity she requires to mitigate the negative effects of sitting in a wheelchair all day, and to prevent muscle atrophy and further scoliosis, so I will not elaborate further on Eug's living situation, except to say it falls short of supporting all of her needs. Thankfully we have some amazing frontline staff supporting Eugenie who really love her and want the best for her. But they are limited in what they are allowed to do. Compounded by the fact that there is a high rate of staff turnover, and you get a lot of staff supporting my girl who are not experienced in her needs.
The harsh reality is that my daughter’s needs are not being met on a regular basis. The things that were promised (physical activity, swimming, riding her trike, physio, range of motion stretches, etc.) are not being delivered.
As a mother this is heartbreaking and unacceptable, and at this point the only solution I can come up with is to continue to support Eugenie as best as I can, and hire private caregivers to engage her in physical activity, to keep her active and involved in her community, as well as send her for a week a month to "boot camp". That's where you, the public, come in ;)
(UPDATE May 18, 2024:
When I began this fundraiser in Sept of 2023, I wasn't sure what the future looked like, and I still don't. I do know that one week of Conductive Education "boot camp" per month is $4550. To hire private support staff to do physio, take Eug out on her trike and keep her active on a daily basis for the rest of the month would round that number out to $6000/month. Our goal for a year was $50,000. If we raise the remainder of that now (roughly $32,000), that will take us almost to the end of the year, and then we re-assess. In a perfect world this would be a temporary situation, but according to the track record thus far, it’s not going to get any better any time soon. At the same time I remain hopeful that the situation will improve, and believe me, I am doing everything in my power to make positive change for Eugenie. So our monetary goal of $50,000 remains.)
Any and all monies raised will go towards hiring private support workers to get Eugenie out into the community, participating in physical activities and fun stuff, and/or time away with her long-time physiotherapist who can give her the most amazing physical activity and fun. I will provide regular updates here for accountability reasons, and the books are open to the public.
This plan is not sustainable, but it will keep our heads above water for the time being. The Ontario Government needs to implement some serious changes to our system when funding residential support services for complex special needs individuals, whose requirements differ greatly from the general population.
Now all I can do is support Eugenie to the best of my ability, advocate for her quality of life, and fundraise like I always do. Shouting it from the rooftops might not be bad idea either.
I am an open book and more than happy to discuss our situation in greater detail (because there is a lot lot more to the story) to anyone who wants to know more. If there are other families out there facing similar challenges and dilemmas, I would love to hear from you. Perhaps together we can elicit change and implement policies that will deliver to our children the respect and dignity that we all deserve.
Eugenie and I thank you from the bottoms of our hearts for caring xo
Videos of my girl in action. God I love this kid! :
Organizer
Angela Richard
Organizer
Southampton, ON