Help Hasan With his SMA Type 1 Diagnosis

Meet Hasan, a 5-year-old born on May 3, 2018, in Ontario, Canada, who was diagnosed with Spinal Muscular Atrophy (SMA), Type 1 (severe) at just 27 days old. SMA is a genetic muscle-wasting disorder impacting the nerve cells, called motor neurons, which control voluntary muscle. SMA causes motor neurons to die off, impacting the brain's ability to deliver signals to the muscles. This condition occurs in 1/10,000 children and means that Hasan is fully dependent on others in all areas of daily living. This includes mobility, dressing, feeding, bathing, toileting, communication, and travelling from one place to another. Despite being informed that Hasan would likely not make it to his 2nd birthday, he defied all odds and persevered through all the challenges that have come his way thus far.

Furthermore, Hasan requires the use of a wheelchair and support for transfers around the home, at school, and when outdoors in places such as school, doctor offices, hospitals, and outdoors in general. An accessible living space along with appropriate transportation means are essential to allow for adequate care. However, Hasan’s current means of transportation are not conducive to Hasan's support needs, as his family does not have the funds to purchase an approved wheelchair-accessible van that includes a lift, making transfers into and out of the vehicle significantly easier. As Hasan is growing, he requires two-person lifts and transfers. Due to his father's work schedule, there are times when only one caregiver, Hasan’s mother, can be present. This is a barrier to mobility when Hasan is required to leave the home and travel anywhere outside, as it is hard to lift him into and out of their current vehicle.

WHAT WE ARE FUNDRAISING FOR:

Hasan’s family is hoping to raise funds for a wheelchair-accessible van that will help improve Hasan’s quality of life as a child diagnosed with Spinal Muscular Atrophy Type 1. To do so, Hasan’s family will need to purchase a relatively new van that falls within the requirements for approval. The vehicle needs to be in new condition, the vehicle model must fall within the five most recent years, and it must have no history of collisions due to safety reasons. Thus far, it has been a challenge to find a used van that meets such criteria. Due to this, Hasan’s parents contacted representatives at Silver Cross Automotive, who sell vans and make them wheelchair accessible, meeting all the requirements. As stated by a representative at the company, a new Granite 2024 Chrysler Grand Caravan will cost $92,850.30 to purchase. As this is a large sum of money, Hasan’s family would greatly appreciate any help and generosity shared towards their campaign.

A wheelchair-accessible van will provide a mode of transportation for optimal functioning and the safety and well-being of the entire family. Such a vehicle will also provide enough room for Hasan’s equipment as he requires a portable ventilator (to breath) and a suction machine (to clear his airways of mucus). Additionally, there are associated risks for physical health and safety transferring Hasan from the home to the family’s current non-wheelchair-accessible vehicle, as Hasan’s parents have to carry him into the vehicle themselves. Up until now, Hasan’s parents have done everything in their power to handle this issue themselves, but as Hasan’s mother is now experiencing back pain due to lifting Hasan into their current vehicle, she would benefit immensely from a wheelchair-accessible vehicle. Additionally, as Hasan lives in Canada, carrying him by hand in the winter months poses a danger to not only Hasan’s health and safety but also that of his caregivers, as there is an increased risk of slipping and falling when carrying Hasan, who is growing every day and only getting heavier.

Once our campaign goal is met, we will send the money over to the vendor, Silver Cross Automotive, so they can proceed with the purchase of the 2024 Granite Chrysler Grand Caravan and with the installation of the wheelchair-accessible lift. Please note: that even when this campaign launches officially, Hasan’s family will continue to look for a used van in perfect condition that fits the requirements for approval. If Hasan’s family can find a van for a good price, this campaign’s earnings will be used to purchase the used van (if there have been enough funds raised), and the fundraiser will be closed officially to ensure that only the required amount of money is raised. Updates will be provided as this campaign proceeds. Please consider these circumstances in the goal of fundraising for Hasan’s accessible transportation accommodations!

A MESSAGE FROM HASAN’S PARENTS:

On behalf of Hasan, we, his parents, thank you for taking the time to read our little Hasan’s story. Although Hasan’s journey started quite unexpectedly with everything seeming perfect in the first few weeks of his life, we soon noticed that something was wrong with his movement, breathing, and feeding patterns and quickly took the necessary actions needed to improve Hasan’s quality of life. Little did we know that following Hasan’s time at the Ronald McDonald House, “a place that provides warm, compassionate, and a safe home away from home for families of seriously ill children who are receiving treatment at a local hospital,” would only be the beginning of a lengthy journey involving several doctor appointments, check-ups, phone calls, therapy appointments, hospital runs, close calls, lots of patience, and incredible resilience.

Hasan has been a strong fighter since day one and continues to make us proud every single day. As his parents, we have worked hard to take care of everything related to Hasan’s care, and although we never had the intention of starting a GoFundMe campaign for help, we are now unable to continue on our own. As our youngest grows, we have faced challenges that we can no longer get around by ourselves. Thus, any donations and contributions towards this cause are greatly appreciated. Your generous donations will make a significant difference in Hasan’s quality of life, and as parents, that is all we could ask for. Hasan also has a 9-year-old brother who has adapted to his younger brother's lifestyle like a true champ throughout the years and without any complaints. With a wheelchair-accessible van, we are hoping to be able to take both of our boys outdoors without having to worry about transportation accommodations every time, especially when there is only one caregiver around. Alone, we can do so little; together, we can do much. Thank you from the bottom of our hearts, and we hope this message sees you well.

With love,

Hasan and Family