| The Hoelands are a wonderfully loving and caring family. They take amazing care of Amanda, doing everything they can for her. I would like to make that a little easier for the Hoelands. And you can help! I am riding for Amanda as much as for myself. Amanda’s love for life, strength to keep learning, and her smile that shows she knows we all love her, will pull me along each mile. PIease consider sponsoring my trip by making a contribution to Amanda. My ride will be just short of 5,000 miles, so a 1-cent per mile contribution would total $50. 1/10-cent per mile would be a $5 contribution. Any amount will help. 100% of the money raised will go to provide care and equipment to Amanda. Absolutely none will be used to cover expenses of my trip. We have tried to set up a non-profit organization to handle donations and provide services and equipment for Amanda, but, at the advice of our attorney, this has been delayed. The restrictions placed on non-profit entities over the distribution of funds would mean that little or none of any money raised would actually go to help Amanda. The Hoelands and I plan to pursue the creation of this organization to help Amanda and other children in her situation in the near future. Until then, non-tax deductible contributions may be made directly to Amanda. This web site will keep you informed about where your donations are going. The site will provide information about services and equipment that are purchased for Amanda with your contributions. Amanda's new wheelchair cost $8,000.00, a huge investment. But the wheelchair is more than just a piece of equipment for Amanda. To her, the wheelchair means mobility- the ability to travel with her family without being carried. Amanda's wheelchair has become an everyday necessity. She depends on it 100%. HIt gave Amanda the opportunity to go out with her family and enjoy the outing as much as her sisters do. It also goes to school with Amanda everyday. It has a custom fit so she can be positioned correctly at all times, whether it be for learning, therapies, circle time, meal time or even a fun activity like coloring with her sisters. Amanda's wheelchair has become a part of Amanda. Amanda has come a long way, even since I started my ride! A bicycle loaned to Amanda by her school has worked wonders. The bicycle supports Amanda's body while her feet are secured to the pedals, and her hands are secured to the handlebars. The bicycle can be controlled from behind by means of a control bar. Tom and Lee were amazed to find that, once she is given a start, Amanda has been able to pedal the bike for short distances by herself! This type of equipment, and the therapy required to teach Amanda to use it, is very expensive. But it has already made a huge difference in her life. Our fundraising efforts got off to a great start! But we are only about 1/3 of the way towards a wheelchair for Amanda. If you have already made a donation, we thank you for your generous support. If you have not yet donated, please consider doing so now. Checks may be made payable and mailed to : |
| The Cause | ||
| A note from Amanda's Mom, Lee Hoeland... |
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"David and my husband Tom have known each other for about 12 years. They officiate college & professional lacrosse together. They both enjoy the sport to the fullest. David has come to know our family through Tom and their many hours driving in the car to lacrosse games together. (A dad with three girls can fill up any amount of time spent on the road!) David has proven to be a wonderful friend. Not just to Tom, but to our whole family."
"David has planned an adventurous bike ride across the country. He originally set out on this trip as just another experience in his life. However, he now has the added purpose of helping our daughter, Amanda."
"Amanda was born with a deletion in her 18th chromosome. This deletion leaves her unable to sit, walk, talk, crawl or grasp objects. She also has developmental and cognitive delays, as well as many other medical problems. The hardest thing to accept is that we do not know what piece of her chromosome she is missing. It is a waiting game to see what she may or may not be able to do. When she was first diagnosed we never thought we would be able to get through the first two months. Now, Amanda is six years old and a wonderful inspiration to us all. She has brought our family closer than we ever thought we could be. Our friends tell us how lucky she is to have us as her family, but we are really the lucky ones. Our Amanda is a special joy to all of us. She has the prettiest smile. She lights up the room and everyone’s life that she touches."
"Amanda is currently attending school at the Children’s Therapy Center in Fairlawn, NJ. She receives physical, occupational and speech therapy at school. She has done wonderfully at school. Amanda is now sitting on a variety of seats and doing great on them for short periods of time. She sits on the floor at home and watches her sisters play for 45 minutes at a time. This alone is an accomplishment we have celebrated! Amanda is making great strides in learning to walk. She is using several different pieces of equipment at school to help her learn how to take a step. Although she is not taking steps on her own, with assistance she is roaming the halls at school every day. Amanda is learning to use a communication switch to make choices, communicate, and work the computer. I live for the day she looks at me and touches the I LOVE YOU switch with a puposeful touch. Of course, we never lose hope that one day she may say these words, too. Amanda recently got glasses, and it is easy to tell that she can see so much more now. I could go on and on about Amanda. Lets just say she is making wonderful progress and we continue to pray for more."
"But with every step forward we take two steps back. Amanda, thank goodness, is growing. But this brings us to need special positioning chairs, wheel chairs and other equipment for her at home. This equipment costs more than we ever imagined. And our insurance company has been less than accommodating. It is a bit overwhelming to find out just how expensive everything is. Even more so to find out our insurance company cannot or will not help us as much as we need." "Many of Amanda's medical expenses are only partially covered by insurance. Some procedures are not covered at all. We have to fight for very dollar we get from our insurance company. This is where David comes in. He lent his shoulder to Tom and got more than he bargained for. Then he came up with this wonderful idea to ride not only for himself, but also for Amanda."
"It is never easy to ask for help, but when friends like David are offering, it is even harder to turn down. Our family has been blessed with wonderful friends and family. We are very thankful for each and every one of them." An Update on Amanda 8/13/04 Starting in August Amanda has started a new kind of physical therapy. She is now doing MEDEK therapy - to try and explain it quickly - this therapy is to make her aware of what her body can do - to understand what her body can do by movements - for example: to teach her to put her arm out when falling - that there is a purpose for her arms, legs, hands, feet, etc. Each sensory movement gives a new message to the brain and with repetition the brain should learn each movement. She is already showing signs of placing her hand down when being put in a sitting position. With a placement of the hand when it is not in place continues to give her the message to use it. We have counted to ten when she is standing leaning against a wall with only the support of her back up against the wall - this is also great. She is also showing signs of righting herself to an upright position when she bends to far forward. We are looking forward to seeing what else Amanda is going to be able to do - unfortunately at the moment our school system is only helping us with August therapy - come September it is all out of our pocket. For more info on MEDEK therapy you can log on to WWW.CUEVASMEDEK.COM and WWW.MEDEK.CAWWW.MEDEK.CA
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