Ottilia and Family

Ottilia was born healthy and strong on the month of August 2022.

As you can imagine our world was perfect with two beautiful and healthy girls. Until one day at the end of January 2023, both girls caught RSV (Respiratory Syncytial Virus). Big sister Ezralene was 2 and Ottilia had just turned 5 months.

Big sister was able to handle RSV better than Ottilia.

Ottilia became floppy and she had no energy at all. It was very worrisome for mom and dad to see. Living in the north of James Bay (Inland Cree) was tough, we went to the emergency two nights in a row, Ottilia was sent home twice with Tylenol and Motrin. That 3rd day, Ottilia was becoming more floppy and unable to feed, we started using a syringe to help her feed and her breathing was becoming more unusual.

Mom drove Ottilia 1 hour outside of the community to seek a 2nd opinion from an Emergency doctor who later said to treat her right away with Antibiotics for Pneumonia and informed us that the medication should work on the 3rd or 4th day and Ottilia should start feeling better by then.

Following day, we are in Val-D'Or QC (3 hours from our community) for the weekend. Saturday night comes, this is 3rd day of antibiotics, her breathing was becoming worse, she is unable to feed at all without being force fed with a syringe, her eyes were going back (signs of seizures) and we called 911 to go to the emergency right away. We stayed in the hospital for a week and all theses tests came back normal, her x-ray was normal and no signs of Pneumonia but she was tested positive for RSV.

That Wednesday morning, the doctor asked the very hard question that no parent wants to hear, "Are you the carriers of the Cree Leukoencephalophathy (CLE)?". When I asked my father if he remembers my results from high school, "I have no idea what you're talking about" he responds, then I realized when we were 13 or 14, we did a blood test at the high school that was mandatory for us to take, afew weeks later we were given our results and said something about having babies. Who plans babies at 13? I called our local clinic and asked for our results that was dated back in 2006 or 2007. Then we were told our results through the phone, while sitting on the hospital floor while Ottilia is sleeping on her crib as I hold my chest and squeezing my shirt and hearing the sentence: "You and your husband are carriers of this disease, the child does not show any symptoms until they get sick the first time with a fever or a virus, how old is your baby?" she asks.. "She just turned 5 months"

"I am so sorry, they usually start showing signs between 3 months to 9 months, babies don't make it to reach the age of 2". My heart sinks and my mind is everywhere.

The next day, it's Thursday afternoon, we were transferred to Montreal Children's Hospital to seek help from the Neurologists. During our stay at the Children's hospital, Ottilia was diagnosed with Cree Leukoencephalopathy (CLE) and confirmed with a blood test. CLE is a disease which is passed from parent to child. This disease affects the brain development of young children. There is no cure for this disease. The only way we can help Ottilia is keeping her healthy as long as possible. I continued to stay home after my maternity leave but it ended in February 2023, since then, we received no income, and my husband took time off of work that same February or March to be at home with our girls. Ezralene; the big sister's daycare was cancelled and she is at home with us. We couldn't have big sister at daycare and bring home a virus, especially to Ottilia who is very vulnerable.

In June 2023, everyone in our household caught COVID-19 and Ottilia regressed very quickly. Our worlds fell apart when we realized what was going to happen to Ottilia but we remained strong for both our girls. We stayed in the hospital for two months, still not receiving any income from anywhere, financially, we were drowning. And emotionally, we were falling, we were losing Ottilia.

By Mid-June or End of June, Ottilia showed signs of passing away, everyone believed she would pass. She turned cold, pale and blue. 2nd day of her breathing tube extubation. She started to pink up and body temperature was warm, she opened her eyes and started moving her left arm. We believed she became blind.

(In Montreal, is where we lived for school but now we have kids, we want our children to start school in the city and to have other choices of sports, hobbies, to have better education than we did, etc).

And since being in Val-D'Or QC, we were using our money to stay in the hotels and order in food and buying snacks for Ezralene. Paying gas money, bringing mom some food in the hospital because mom is not the patient and food was not provided.

We tried seeking help from Cree Health Board and Cree Patient services (services to help Cree people for medical appointments, emergencies and receiving medications that you don't have to pay). But we were denied to have help because we live OFF reserve and we were told we were on our own. But when we were transferred to Montreal, it made us save some money on food but parking and gas were starting to become a small problem. Parking was almost $20/daily and paying gas every week at nearly $180/full (Yukon SUV) and then we eventually have to buy groceries.

Our baby girl had become disabled, who is NOT blind, she clearly sees and hears.

We stayed at the palliative care clinic/mini hospital for a month and when we realized that Ottilia was showing us that she was not going anywhere, we got discharged and returned home to our Montreal home!!

Being at home means, we had to order a few equipment for Ottilia to be at home, because she is on feeding tube 24/7, she is unable to chew or swallow, the feeding pump was provided from the hospital, everything else we had to order online and get her medications at our usual pharmacy. Her medications are very expensive, her 4 medications came up to a bit over $400 and this is every few weeks that we have to pay this much but it might be more eventually because her medications are being increased whenever her previous or current dose is not helping much anymore. This is not including my medications (mom), I have Hashimoto's Disease and Iron Deficiency Anemia, which I also need my medications every month but it is not as expensive as Ottilia's medications (we also have no insurance).

As the days go on without any income, we are struggling, we are drowning. But with your help, as small as a dollar ($1), it would be deeply appreciated!!

We thank you so much in advance!! <3

-The Neeposh Family