The Hajjars Stride for a New Accessible Ride
Donation protected
Hi! My name is Missy, and thank you so much for stopping by. My dear sister Meg and her family, the Hajjars, are in need of some assistance, and I'm hoping you can help.
The Hajjars are in desperate need for a larger adaptive van for their son Neil and his wheelchair. A properly-sized van is so important and necessary for them, as it's the only way Neil is able to travel safely. They have outgrown their current van - there just isn't enough room for Neil and his two siblings to all sit together safely and comfortably anymore.
Who is Neil, and what types of disabilities does he have?
Neil was born 10 weeks early at 3 lbs. 1 oz. and spent 3.5 months in the NICU with respiratory and feeding problems. He was diagnosed with MECP2 Duplication Syndrome around 9 months, a disorder which has caused Neil to have severe developmental delays, an inability to walk or talk, and extremely low muscle tone which then causes GI complications and respiratory issues.
He also suffers from seizures that are extremely difficult to control with medication. When Neil was just under three years old, he suffered a large stroke and was then diagnosed with a second very rare genetic disorder called Moyamoya Disease. He required brain surgery to help prevent future strokes.
Neil is now 10 years old and growing rapidly. He has very poor circulation from being unable to walk, and has to keep his legs elevated in his wheelchair to prevent a skin infection called cellulitis. He requires appointments regularly with a variety of specialists who help to monitor his ongoing health challenges.
Since Neil cannot walk, his hips haven’t developed properly, which has resulted in hip dysplasia. Since Fall 2020, he’s had a dislocated hip and will be having major surgery in Spring 2021 to cut the bone, and fix the dislocation. It will take about 6 weeks to recover.
Neil and his family go through a lot each day to help Neil feel comfortable and enjoy life.
Neil loves spending time with his siblings, Luke and Kit. He also enjoys watching his favorite shows like Thomas the Train and Dora the Explorer, and being read to. He also looooves to eat!
*Please see the video - "Say Hi to Neil"*
Their Current Van:
Neil has been growing a lot lately, and has recently been fitted to a larger wheelchair, which makes it difficult getting into the current adapted van. The current van has a side entrance with a ramp. After pushing Neil up the ramp in his heavy wheelchair, the chair needs to be lifted by hand to position it straight. His feet can get easily caught on the front seats, and there is concern that either Neil or one of his parents will get injured while he is transported in and out of the van. The combined weight of Neil and his chair is over 100 pounds! Neil's siblings, Luke (10 yrs) and Kit (8 yrs) have very little room to sit behind Neil in the current van.
*Please see the video - Getting Neil into the Current Van*
My sister and her family are in need of a larger van that can accommodate Neil with his elevated legs, as well as the rest of the family!
The New Van:
With your help, the Hajjars will be able to buy a larger, more accommodating van that will fit Neil and the whole family safely and comfortably!
The new van would be something comparable to a Ford Transit. Meg and her husband Mike are still deciding on which dealer to go with, but the van will cost in the range of $50,000-$70,000.
Along with a larger interior, the new van will have an electric lift for Neil and his wheelchair.
Once Neil is lifted into the back of the van, he can be pushed straight forward to the front and not need his chair manually rotated like in their current van. The larger interior space will allow for additional seats so Neil's siblings can have ample leg and foot room, instead of needing to keep their feet on their brother’s wheelchair.
Right now, taking Neil somewhere is very physically demanding and at times overwhelming for his parents. Due to COVID, they are currently not using a nursing agency so my sister and her husband Mike are Neil's only primary caregivers. If they were to injure themselves lifting his chair in their current van, that would be a huge problem.
*Please see the photo of the new van, which is a general representation*
Any support you can provide to this amazing family would be so greatly appreciated. The challenges they face with Neil everyday because of his special needs is something most people will never quite understand. Getting this new van would eliminate their worries of how they will transport Neil comfortably and safely to doctors appointments and how they’ll be able to go anywhere as a family. It is so important for Mike and Meg to do things with all their kids together. A new van will make such a big difference in their lives.
I thank you from the bottom of my heart for reading their story, and for your consideration to help.
And please share the link to your Facebook Timeline to spread the word!
The Hajjars are in desperate need for a larger adaptive van for their son Neil and his wheelchair. A properly-sized van is so important and necessary for them, as it's the only way Neil is able to travel safely. They have outgrown their current van - there just isn't enough room for Neil and his two siblings to all sit together safely and comfortably anymore.
Who is Neil, and what types of disabilities does he have?
Neil was born 10 weeks early at 3 lbs. 1 oz. and spent 3.5 months in the NICU with respiratory and feeding problems. He was diagnosed with MECP2 Duplication Syndrome around 9 months, a disorder which has caused Neil to have severe developmental delays, an inability to walk or talk, and extremely low muscle tone which then causes GI complications and respiratory issues.
He also suffers from seizures that are extremely difficult to control with medication. When Neil was just under three years old, he suffered a large stroke and was then diagnosed with a second very rare genetic disorder called Moyamoya Disease. He required brain surgery to help prevent future strokes.
Neil is now 10 years old and growing rapidly. He has very poor circulation from being unable to walk, and has to keep his legs elevated in his wheelchair to prevent a skin infection called cellulitis. He requires appointments regularly with a variety of specialists who help to monitor his ongoing health challenges.
Since Neil cannot walk, his hips haven’t developed properly, which has resulted in hip dysplasia. Since Fall 2020, he’s had a dislocated hip and will be having major surgery in Spring 2021 to cut the bone, and fix the dislocation. It will take about 6 weeks to recover.
Neil and his family go through a lot each day to help Neil feel comfortable and enjoy life.
Neil loves spending time with his siblings, Luke and Kit. He also enjoys watching his favorite shows like Thomas the Train and Dora the Explorer, and being read to. He also looooves to eat!
*Please see the video - "Say Hi to Neil"*
Their Current Van:
Neil has been growing a lot lately, and has recently been fitted to a larger wheelchair, which makes it difficult getting into the current adapted van. The current van has a side entrance with a ramp. After pushing Neil up the ramp in his heavy wheelchair, the chair needs to be lifted by hand to position it straight. His feet can get easily caught on the front seats, and there is concern that either Neil or one of his parents will get injured while he is transported in and out of the van. The combined weight of Neil and his chair is over 100 pounds! Neil's siblings, Luke (10 yrs) and Kit (8 yrs) have very little room to sit behind Neil in the current van.
*Please see the video - Getting Neil into the Current Van*
My sister and her family are in need of a larger van that can accommodate Neil with his elevated legs, as well as the rest of the family!
The New Van:
With your help, the Hajjars will be able to buy a larger, more accommodating van that will fit Neil and the whole family safely and comfortably!
The new van would be something comparable to a Ford Transit. Meg and her husband Mike are still deciding on which dealer to go with, but the van will cost in the range of $50,000-$70,000.
Along with a larger interior, the new van will have an electric lift for Neil and his wheelchair.
Once Neil is lifted into the back of the van, he can be pushed straight forward to the front and not need his chair manually rotated like in their current van. The larger interior space will allow for additional seats so Neil's siblings can have ample leg and foot room, instead of needing to keep their feet on their brother’s wheelchair.
Right now, taking Neil somewhere is very physically demanding and at times overwhelming for his parents. Due to COVID, they are currently not using a nursing agency so my sister and her husband Mike are Neil's only primary caregivers. If they were to injure themselves lifting his chair in their current van, that would be a huge problem.
*Please see the photo of the new van, which is a general representation*
Any support you can provide to this amazing family would be so greatly appreciated. The challenges they face with Neil everyday because of his special needs is something most people will never quite understand. Getting this new van would eliminate their worries of how they will transport Neil comfortably and safely to doctors appointments and how they’ll be able to go anywhere as a family. It is so important for Mike and Meg to do things with all their kids together. A new van will make such a big difference in their lives.
I thank you from the bottom of my heart for reading their story, and for your consideration to help.
And please share the link to your Facebook Timeline to spread the word!
Organizer and beneficiary
Melissa Bauer Petersen
Organizer
Trenton, NJ
Meg Bauer Hajjar
Beneficiary