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This fundraiser ended on 02/29/12

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Family seeking help to purchase a wheelchair accessible van for our severely disabled daughter. Any support will be appreciated!

Meet Michaela...

Michaela is a very happy and social 14 year old. She loves to "sing", play with her sister and laughs when our Labs Bear and Bella romp around. She also is non-verbal, non-ambulatory and legally blind.

She has total agenesis of the corpus callosum, cerebral palsy, scoliosis, kyphosis, Chromosome 8p Deletion and Inverted Duplication Syndrome and a cortical visual impairment among other things.

She has endured numerous surgeries including a nissen fundoplication and G Tube insertion, achilles tendon releases, had her right hip rebuilt twice and in November, 2011, had a a major spinal fusion from T-2 to the pelvis. (She had scoliosis of 96 degrees and kyphosis (forward bend) of 90 degrees on the day of surgery.) She is still receovering from that surgery now. She is also most likely going to have more surgery on her right hip as the hip is still subluxed (partially out of joint) since the second surgery in September, 2010.

Our Plea for Help...

As much as we want to handle all things ourselves, sometimes as parents we must set aside our pride and ask for help from others. We are currently struggling to afford a handicap ramp van to use to transport Michaela. We live in New York state and almost two years ago, submitted for funds from the state to help pay for a van conversion. We were just informed this week (1/11/12) that the funds have been approved and a check cut, but we must first purchase the van. (Our current van has 115,000 miles on it and they will only convert a van with less than 30,000 miles on the odometer.) However, as with many people, our financial situation is worse off than two years ago and we are no longer in a position to purchase a new van. The state funds for the conversion (about $22,700) will be lost if we can't come up with the purchase money.


Currently we have a regular 2006 Chrysler minivan and purchased an EZ On vest harness to keep her safe. (She would slide under a regular seat belt.) The problem we have is with lifting her from the wheelchair into the seat and lifting the wheelchair into the back of the van. Since Michaela has gotten larger, my husband performs most of the lifting. However, he has a heart condition and had heart attacks in 1998 and 2008. He also has two herniated discs in his back. I do my best to help, but currently have a hernia from the lifting.

Michaela is in significant pain with each transfer into and out of her wheelchair. Therefore we rarely leave the house with her unless it to go to school or a doctor appointment. As much as less lifting for us would be a benefit, the true blessing would be less pain for her and the ability to take her out more often. Even running errands as a family would be wonderful if we could do them together, instead of one of us always staying behind to stay home with her. She is very social and currently is missing out on many activities that many of us take for granted, because of her issues.

If you find that you can donate anything towards a van for Michaela, please use the Donate button. We thank you from the bottom of our hearts and appreciate you being part of Michaela's Village. Prior to donating, we will be happy to respond to any questions you may have. Michaela's Case Manager from the Epilepsy Foundation of NENY, Jenny Guerette, is also willing to verify the information provided concerning our situation. Please use the email below to address any questions and we'll get back to you as quickly as we can.

Either way, please read the backstory pages to learn more about our special girl at a website we created for her http://michaelasvillage.com/.

If you have questions, please feel free to email us at: Michaelasvillage@nycap.rr.com

We are always happy to talk to other parents of disabled children, to share our experiences and help others learn from our mistakes. We have benefited from the wisdom of others and are happy to pass on any help we can to the next family. For families with children with the rare Chromosome 8p Deletion and Inverted Duplication Syndrome, we recommend the UNIQUE website: www.rarechromo.co.uk Their information was quite helpful to us when Michaela was first diagnosed.

Our goal is to raise any part of the approximately $30,000 that it will take to buy the van. Per the mobility dealer, the state funds cannot be used on a van that was previously registered, so that eliminates most of the older model vans in their inventory. (Most are previous rentals or were bought and returned because the user no longer needed the van.) So that leaves us looking at buying a 2011 or 2012, which would mean a monthly payment of approximately $600, which we just can't afford. We would have been happy to get a 2008 or so, but then we would forfeit the state funds to pay for the conversion. It would have been great if the state would allow the funds to be used on any ramp van, but that's against the rules. We were told that the conversion must have been done in the last few months, as the state doesn't want to pay to buy a van that they might have already paid to convert previously. (Which does make sense.)

Thanks for taking to time to read about our situation and our very special girl!

Wishing you Health & Happiness!
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