When she was 4 months old she started having severe seizures .her mother and i not knowing what was going on with her never made anything of it . One day at a doctors visit she had a bad seizure and thats where everything started to escalate . New doctors , test after test . Never ending medication trials to find the right med combo to try to control them . Endless sleepless nights to this day worrying if shes ok . The list goes on as well as the mental and physical strain on her mother and myself .
Not long after we noticed that she was unable to focus on anything and one eye was crooked also she was not using her right hand or leg . She would always keep her hand in a fist not using it and her foot was curving due to the ligaments tightning from not moving or using it . So back to the doctors we went and found out that she was partially paralyzed on her right side and that she had cortical blindness from the severe scaring on her brain . many more tests and stress to add to the the ones she already had .
Then there was that day that she swelled up like a blowfish . Once again off to the hospital not knowing what the heck happened. Turns out she is allergic to peanuts and had eaten something with peanuts in it . Add that to the list now lol
To this day she cannot walk , talk or see anything but light . She remains with the development of a 2 year old . her seizures have been somewhat stable and she remains a happy girl.
The pressure and stress got to both her mother and i . we began to take our anger out on eachother not long after we split up .
Now im by myself ,devastated without the girls and now a single dad of a 2 year old special needs child and her 3 year old sister with a full time job and still needing to work overtime.
It wasnt easy and still isnt but i manage to do what i have to to keep the girls happy .
Her mother and i have shared custody but because she has them more than i do and she doesn’t work she receives all the help and tools she needs to take care of Ellie-may . There is obviously some things that we can share but not all . If i could afford to get her all the thats the things she needs obviously i would not be writing this .
Ive been able to manage without all things that we need but now she is getting to heavy and hard to carry and im affraid of hurting her .
She is in need of a bathtub lift with anything else required for the washroom .
need a track system or some sort of lift to get her in and out of bed safely.
going to need a hospital bed because she is out growing the bed she has now .
I live in the bottom unit of a 3 story condo with stairs leading down to my door so i would need a wheelchair lift to install there .
i have a van now but it is not fitted for a wheel chair . I would like to get one that is because i am lifting her in and out of her seat so once again affraid of hurting her and my self .
My insurance covers some of her therapies but not all and only to a maximum of a certain amount of dollars.
Would use some money to get her the therapy she needs that she hasn’t been getting because i cannot afford it .
those are essential things she needs .if there is enough money received i would like to make her a snoezelen room to hopefully help her develop , stimulate her .
Thanks in advance to those who help . I never though in all my life i would be in the position i am today but life is full of surprises and any loving parent im sure would go to any length to get what is needed for there children as i am doing .
Thanks again .
- Marilyn Dubois
- Lucette Trottier
- Jules Ann
- Germaine Felix
- Gerald Burke
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