Lets Help Otto

The Otto Elke Fund,

I will start by telling you a bit about Otto. Otto was born on June 20, 2020. Numerous complications at birth happened during labor, which is currently being investigated and confidential. Due to these complications, Otto was diagnosed with HIE(hypoxic-ischemic encephalopathy), which resulted in Cerebral Palsy and Epilepsy. This has caused Otto to have a delay in development and restricted movements of his limbs. He can have up to hundreds of seizures a day with his epilepsy. Otto is tube fed and on a Keto diet to help control his seizures from the brain damage. Otto is on five different seizure medications that need to be distributed every 3 hours, plus additional medication to keep him healthy.

Leah, my sister, has looked for child care for the past year and a half; this has been extremely exhausting for her. Because of his high needs, she has been denied by local daycares in the area. The medical attention he requires would not be conducive to a “regular” daycare setting. Leah has reached out to numerous so-called “resources.” Home care was a process in itself, resulting in being rejected. They suggested that she reach out to Disability Services. Leah worked with them regarding one on one in-home care for six months. She felt there was a light at the end of the tunnel. They approved funding based on all her supporting documents. They directed her to hire a support worker. Finally, this would allow her to return to the workforce to support her family. With numerous interviews, Leah found Randi and offered her the position. The connection and security she felt with Randi knowing Otto would be well taken care of with her genuine support in a short amount of time, has been remarkable.

On Tuesday, March 15th, disability services came for a home inspection, and everything looked great. Two days later, Thursday, March 17th Leah received a call; they were no longer going to provide her with financial aid for the support worker they approved to hire. They indicated, “sorry, but we made a mistake.” Working with them for six months to approve and then pull the carpet right out from under with only two months before returning to the workforce is cruel. Especially with all the other daily challenges, she has to deal with.

After receiving the devasting news, she has reached out to almost everyone and anyone, from the Ministry of Families, MLA, social workers, private homecare businesses, etc. This led Leah back to disability services, and she talked with the regional director. They approved respite hours for a short period but not intended to use during work hours. Disability services believes that Otto can go into a daycare setting, dismissing all supporting documents from medical professionals that don’t recommend this type of environment being suitable. They provided unrealistic support for Otto’s medical requirements because they have no services for childcare for young children with disabilities.

When you have a parent trying to do the right thing by being a contributing member of society, have some independence and go back to work to pay into insurance benefits which will help assist with medical needs, being told to quit her job and take of her son or give him up into the system as then “they” are obligated to provide support is beyond words.

I have never seen so many systems give a parent so much false hope on top of all the other emotional trauma. It has taken a significant amount of time away from enjoying life with Otto.

Can you imagine the emotions and the mental exhaustion this has caused her? I was truly hoping she would find something, but everything has failed. With many medical expenses, no parent can ever be prepared to raise a child with a disability to no fault of their own, from equipment, transportation, medications, and so much more that is not covered. I feel that my sister would need reassurance to go back to work and know that Otto is in a safe environment and well taken care of, considering all the obstacles, errors and false hope that she has endured. This experience has been extremely draining to Leah and our entire family, trying to support them.

The GoFundMe page hopes that we can all come together and provide financial relief through these tough times to pay for in home-one on one care for Otto, as this is the only option left.

Otto has been a fighter since day one; he is genuinely one special boy that touches the hearts of everyone he meets, with his contagious big smile lighting up the room.

Your contribution would be appreciated and impact the quality of life we all know he deserves.