Jonah's Story
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After 13 years of offering to help my sister and brother in-law with my nephew they have finally accepted to let me help them with some fundraising to ease the financial strain they have been facing over the last decade. Honestly, I don't know how they survived financially with all the expenses they have had to cover over the years.
The first year of Jonah's life they spent in the hospital with him at the Janeway hospital in St-Johns NL and transferred to Montreal Children's 6 months later for another 5 months, not to mention away from home and their 2-year-old daughter. My sister's water broke at 23 weeks and she was bedridden and induced at 28 weeks. Jonah was only 2lbs 7 oz and had many medical setbacks from collapsed lungs, cardiac arrest, bilateral hearing loss, many blood transfusions and severe acid reflux.
Getting discharged finally at almost a year of age and going home with very complex medical conditions was very scary to say the least. Jonah was on portable oxygen until he was 3 years old, his house was more of a mini hospital than a home.
Jonah was later diagnosed with spastic dyskinetic cerebral palsy, epilepsy, sensorineural hearing loss, spastic quadriparesis, severe dystonia along with a global development delay. The 13 years of his life he underwent many ups and downs. In 2006 he underwent fundoplication for severe acid reflux, in 2012 he spent 3 months in the hospital with flesh eating disease which was an awful experience as it took forever to find the diagnosis as Jonah was not able to talk but was in excruciating pain. In 2015 he had bilateral hip surgeries and was casted for 13 weeks and within the last year one became dislocated due to severe scoliosis. With the severe scoliosis progressing fast they had to decide to undergo another massive surgery. They were aware of all the complications and possible risks associated with that day on 26 Nov 2018, but felt they had faith Jonah would pull through. Jonah, the little fighting champ that he is, made it through but it was a long road to recovery. There are still many sleepless nights but he is on the right path.
For the past year, my sister was unable to work due to the fact that Jonah was not able to attend school other than a couple of hours a day due to the fact that he was uncomfortable with positioning and had a dislocated hip which made transfers difficult and if done wrong, painful. Finally, Jonah had the call they were eagerly anticipating but dreading at the same time, the surgery date was set. My brother in law returned home after Jonah was stable as they were paying for a hotel room and taxis with neither of them working. He went home to be with their daughter and to help renovate their house which cost nearly $30 000 in order to accommodate Jonah by moving his room on the main level, creating a bathroom and setting up a wheel chair ramp outside their house. They did get some financial assistance for renovations, however it was not nearly enough to cover it all.
The reason I am requesting your financial aid is that they are the type of people who are always quick to offer help to everyone else and feel there are people worse off than they are. They have to date spent $100 000 on medical appointments, renovations, custom made sleighs, strollers, and much more to ensure Jonah could have a good quality of life. I was at one of Jonah`s appointments with my sister and will never forget that moment when I heard them mention that kids like Jonah only live until they are 14-15 years of age. Jonah has been a fighter and he pulled through things that were considered a miracle so hopefully he will prove them wrong on this one.
Following his most recent surgery, Jonah's positioning has changed quite a bit, this is positive, as he is much more comfortable now, however with this change now comes new modifications with seating. The vehicle they currently own is almost 9 years old and the new seating Jonah will acquire in the near future will be much larger. They need to purchase another vehicle that will allow them the space for Jonah to be comfortable and also transport his equipment. This is bringing them much stress, as they don't know how they will be able to make this purchase.
The trips that they have taken as family were always surrounding their medical appointments as some of the costs were covered, not much but it helped a little. It would be nice for them to be able to take a vacation like other people and not have to worry about finances. They never get a break as my sister must feed Jonah all his snacks and meals, change his diapers, bathe him and not to mention he only sleeps 6 hours a night, and that is on a good night.
I feel the need to help them, they never ask for anything and would do anything for anyone, so let's take away some of their financial stressors as this is little compared to the stress they manage daily with Jonah's medical conditions. Let's help them acquire some funding to enable them to purchase a vehicle that will be suitable for their needs.
The first year of Jonah's life they spent in the hospital with him at the Janeway hospital in St-Johns NL and transferred to Montreal Children's 6 months later for another 5 months, not to mention away from home and their 2-year-old daughter. My sister's water broke at 23 weeks and she was bedridden and induced at 28 weeks. Jonah was only 2lbs 7 oz and had many medical setbacks from collapsed lungs, cardiac arrest, bilateral hearing loss, many blood transfusions and severe acid reflux.
Getting discharged finally at almost a year of age and going home with very complex medical conditions was very scary to say the least. Jonah was on portable oxygen until he was 3 years old, his house was more of a mini hospital than a home.
Jonah was later diagnosed with spastic dyskinetic cerebral palsy, epilepsy, sensorineural hearing loss, spastic quadriparesis, severe dystonia along with a global development delay. The 13 years of his life he underwent many ups and downs. In 2006 he underwent fundoplication for severe acid reflux, in 2012 he spent 3 months in the hospital with flesh eating disease which was an awful experience as it took forever to find the diagnosis as Jonah was not able to talk but was in excruciating pain. In 2015 he had bilateral hip surgeries and was casted for 13 weeks and within the last year one became dislocated due to severe scoliosis. With the severe scoliosis progressing fast they had to decide to undergo another massive surgery. They were aware of all the complications and possible risks associated with that day on 26 Nov 2018, but felt they had faith Jonah would pull through. Jonah, the little fighting champ that he is, made it through but it was a long road to recovery. There are still many sleepless nights but he is on the right path.
For the past year, my sister was unable to work due to the fact that Jonah was not able to attend school other than a couple of hours a day due to the fact that he was uncomfortable with positioning and had a dislocated hip which made transfers difficult and if done wrong, painful. Finally, Jonah had the call they were eagerly anticipating but dreading at the same time, the surgery date was set. My brother in law returned home after Jonah was stable as they were paying for a hotel room and taxis with neither of them working. He went home to be with their daughter and to help renovate their house which cost nearly $30 000 in order to accommodate Jonah by moving his room on the main level, creating a bathroom and setting up a wheel chair ramp outside their house. They did get some financial assistance for renovations, however it was not nearly enough to cover it all.
The reason I am requesting your financial aid is that they are the type of people who are always quick to offer help to everyone else and feel there are people worse off than they are. They have to date spent $100 000 on medical appointments, renovations, custom made sleighs, strollers, and much more to ensure Jonah could have a good quality of life. I was at one of Jonah`s appointments with my sister and will never forget that moment when I heard them mention that kids like Jonah only live until they are 14-15 years of age. Jonah has been a fighter and he pulled through things that were considered a miracle so hopefully he will prove them wrong on this one.
Following his most recent surgery, Jonah's positioning has changed quite a bit, this is positive, as he is much more comfortable now, however with this change now comes new modifications with seating. The vehicle they currently own is almost 9 years old and the new seating Jonah will acquire in the near future will be much larger. They need to purchase another vehicle that will allow them the space for Jonah to be comfortable and also transport his equipment. This is bringing them much stress, as they don't know how they will be able to make this purchase.
The trips that they have taken as family were always surrounding their medical appointments as some of the costs were covered, not much but it helped a little. It would be nice for them to be able to take a vacation like other people and not have to worry about finances. They never get a break as my sister must feed Jonah all his snacks and meals, change his diapers, bathe him and not to mention he only sleeps 6 hours a night, and that is on a good night.
I feel the need to help them, they never ask for anything and would do anything for anyone, so let's take away some of their financial stressors as this is little compared to the stress they manage daily with Jonah's medical conditions. Let's help them acquire some funding to enable them to purchase a vehicle that will be suitable for their needs.
Organizer and beneficiary
Aimee Randell
Organizer
Petawawa, ON
Marissa Lavallee
Beneficiary
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