Hi. I'm Bill, Rebecca’s husband. And I would like to introduce her to you.
Rebecca was born with Osteogenesis Imperfecta, better known as brittle bone disease. There are several stages of the disease where some people can walk and only break bones easier with the likelihood of 50% - 75% of most people. Then there is the stage where they break all by themselves. Rebecca is very near the last stage. Rebecca experienced several bone breaks while still in the womb. By age 5, Rebecca had over 500 bone breaks. The doctors declared much earlier that Rebecca would never survive to be 5, but God had different ideas. Rebecca has had over 2,000 breaks before 25 and they simply quit counting.
Both arms and both legs have broken several times, and they failed to grow back together. Her left arm did grow back together, but it has a 90 degree bend just below the elbow. So she has only one usable limb, the left arm, and it is limited. Bent bones are a part of the stage of OI she has. She was born in 1968 and they didn’t know much at all about the disease then. Today, they can do a lot during the growing years and make life much better, but never near normal.
Rebecca has severe scoliosis and her internal organs are all squished out of place. Rebecca’s right lung is almost totally shriveled up and doesn’t do a lot of good. Because it doesn’t move a lot of air, it is very susceptible to pneumonia which she has been hospitalized for several times.
Due to a combination of the scoliosis and brittle bones, Rebecca can’t lay flat on anything without a lot of small pillows supporting her. The same goes for laying on her side. Nearly all of her ribs have been broken many times, mostly from coughing and sneezing. Rebecca has severe allergies too. The allergies are caused by heightened nerve endings all over her body including her taste buds and nose as well as the bones and muscles. Rebecca can’t even lay on a wrinkle because it causes her bones to bruise and eventually break. I have jokingly called her the “Princess and the pea”. It all comes with the Osteogenesis Imperfecta.
Rebecca is 3 feet long and weighs about 50 lbs. I say long because Rebecca can't stand up ever and can’t sit up for more than an hour or two. Rebecca does everything in her chair, toileting, bathing, and most of the time, sleeping. We have a regular bed and I used to be able to pick her up out of her chair and put her into bed and visa versa. But in the last 11 years, both of my knees have given out and I have other back problems. I can still lift her, but the chance of one of my knees buckleing causing me to drop her or even slightly stumbling, is way too high and could even break her back, so I can no longer do that safely. Earlier in her life she wiggled out of her chair into it the bed in the evening and back into the chair in the morning. We jokingly call it the "butt walk". Sometimes Rebecca gets to sleep like a real person. But lately, she has been suffering a lot more pain than she has in the past and can’t do that very often.
Rebecca and I met about 12 years ago through a match making service. I lived in Arkansas and she lived in Missouri. Rebecca was about 32 and I was 58, weighed 270 lbs, and 6’2”. Can we say odd couple? Our getting together is a real Cinderella tale, but that’s another story for later.
Over the past 11 years, my health has declined considerably. I am no longer able to lift and hold Rebecca like we used to.
Rebecca gets cabin fever a lot because of her bones staying sore to one degree or another and of course the allergies. So even a trip to the grocery store is an adventure to her.
About 3 years ago we bought a wrecked fixer upper handicap van for $1,895 plus shipping and I started to restore it. We simply couldn’t afford a better van. We had to replace the right front and the right sliding door, and a lot of other stuff to make it usable for Rebecca. It was the first time ever that Rebecca rode in her chair on the passenger side. She always had to ride in the back before. I continued to work on it as much as I could, but it is now obvious that my restoration plans won’t make it. I had estimated it would cost about $8,000-$9,000 over a period of time if I did most of the labor. But now the computer in the van is giving a lot of trouble and it will cost a lot more money than it is worth. As it sits now, we can’t get as much for it as we have already spent on it. It stops right in the middle of traffic and jerks so bad it hurts her bones, and a new computer costs $999 from the dealer.
Rebecca can’t drive so she must be driven if she needs to go to the grocery store, clothes shopping, movies, etc. Rebecca many times has to see doctors and she is prone to Pneumonia and most ambulances can't handle her without breaking bones. At least I don’t trust them that far.
The old van has straps on the floor to secure her chair in so it doesn’t jostle her delicate frame. That puts a limitation on it because it is now difficult for me to get down to strap her in. We need a van that has a floor lock (EZ-Lock) that she can drive her electric wheel chair on and it automatically locks. Then she can push a button and it unlocks. You can imagine what kind of independence this one little thing can give her. Then anybody could take her anywhere without having to be trained to secure her in properly.
So she needs another van and it doesn't have to be new. New conversion vans go as high as $50,000 to $60,000. I found a 2006 handicap van for less than $30,000.00. These vans are very expensive because the floor is cut out and lowered 10 inches to give head room and maneuverability for the chair. It also requires an automatic door opener with an automatic folding ramp. The conversion on to a new van is $15,000 to $20,000 dollars depending on what is needed, so I consider under $30,000 for a used 2006 van a blessing. It must also have a very gentle ride for her delicate bones.
Rebecca is a very brave women and very cheerful even through all of this as you can see from her picture.
Would you consider helping Rebecca to get a newer van? No contribution is too small. They all count. If you can't, would you share this page on Facebook, Twitter, Google+, Pinterest, or any other social network you may be using? Her bones and healthcare providers would greatly appreciate it. Especially me.
PS. If you contribute $100 or more, she will send an inspirational poem book named "Songs and Poems From The Heart". Those who bought it love it. Please indicate if you wish a digital copy of a booklet.
- Johanna Hoogenboezem
- Ken Wolff
- DeAnn McCann
- James and Ann Booth
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