Hi!  My name is Rebecca Statz, but I usually go by Becky. I’m 46 years old, and wife to my awesome husband Kevin for 19 years. Together we have four kids. Jonathan is 17, Meg is 16, Joe is 9, and Andrew is 6. Seems pretty normal, right? But medically, we’re rather unusual.  Let me introduce you.

  All four kids have disabilities. Jon has Oculocutaneous Albinism which gives him white hair, very fair skin, low vision, and light and sun sensitivity.  He also has Ehlers-Danlos connective tissue disorder (EDS) which means that his body makes collagen improperly. Since collagen is the “glue” that holds the body together throughout all the soft tissues, joints don’t stay in place, ligaments are too stretchy, skin is fragile and scars easily and in an unusual manner.  Any bodily system can be affected by EDS. It typically causes much pain and fatigue especially in the legs. Jon underwent surgery for a Lyme infection in his knee three years ago, and continues to experience fatigue from this as well.

  Meg is by far the most medically complicated child in the family.  Like her older brother,  she has Oculocutaneous Albinism and all that entails. She also has EDS, and hers is the most involved case in the family. It affects her GI system in a number of different ways, gives her terrible migraines, leg and hip pain, subluxations and dislocations. She uses a power wheelchair approximately half of the day because of pain and fatigue issues.  

  Mentally, Meg has slow mental processing,  is very naive and often seems more like a ‘tween. With so much on her plate, it’s no surprise that she also struggles with depression and anxiety.

  Our house is not currently wheelchair accessible. Meg’s wheelchair is either charged in the back of the car during the winter, or is brought up onto the small front concrete patio and plugged in there. It is “protected” by a grill cover.

  Joseph is next. He has EDS as well, and Autism.

  Andrew is the baby, but at 6 going on 16, don’t tell him that. He deals with Ocular Albinism, Autism and EDS as well. Although Meg is currently most involved, my fear is that Andrew will soon catch up. His joints are even more loose and flex even farther beyond normal range than hers do.  He frequently complains of pain in his legs, intensely beyond “growing pains”. That is EDS.

  The older lady next to me is my Mom, Barbara. She owns the house we live in, has a full in-law apartment downstairs, and is the biggest help to me one could ever imagine. From shopping for me to driving to appointments to being the “cleaning fairy” when I’m unable to do it, she is my biggest blessing.

  That leaves me. Well, the EDS comes from me.  I’ve had it all my life, and I deal with severe pain from it every day.  I have to put random joints back in place all the time. The other day I displaced a rib by taking too deep of a breath!   I fatigue very easily too. Two years ago, thinking that the tremor I was noticing in my hands was from the EDS, I retired from school bus driving and saw a neurologist. It turns out that the tremor is from Early Onset Parkinson’s.  I applied for and was granted SSDI.

  Due to the pain and fatigue of distance traveling, I was given a custom-made manual wheelchair two years ago.  A year ago, with the new diagnosis, a new wheelchair evaluation was done, and it was determined that since I was experiencing pain in my hands which we now know is arthritis, far advanced in my left hand, I was definitely in need of a new wheeelchair. A powerchair was indicated since I can’t self-propel, and one was chosen which would elevate my legs to help with EDS pain and Parkinson’s edema, and which could move vertically to table and counter heights.  This is the ideal  powerchair for me, the doctors tell me.

  The manufacturer, however, will not sell the chair to me until I have an accessible home and vehicle. I’ve begun working with Granite State Independent Living Center, and they will partially pay a contractor to install a lift to our second floor deck in the back of the house.  We will have to pay for the balance, which will probably be about $8,000. More on this in a minute.

  Continuing about wheelchairs,  at the current moment, I have no stable mobility device. I purchased a second-hand scooter in desperation, however since one of the main challenges of Parkinson’s is balance, I sometimes have a hard time with it. The scooter has three wheels, and on any sort of angled surface can feel very tippy. Also, it has no arm rests, and that is important for me. My arms get very fatigued holding them out in front of me for any length of time. I definitely want to get what the doctors think is best for me, and I need to bring an end to the waiting game I’ve been playing. I need to make this happen, and I need your help.


   Please help me become fully, independently mobile again.  I really need to have the powerchair so that doing all of the running around that my "mom's-life" entails on a given day won't mean that I'll be in extreme pain afterwards or too tired to function for the days afterwards.

  The situation has become desperate and time-sensitive, since when the contractors come to install the lift, they will need a deck that is in good enough condition to safely attach it to.  WE DO NOT HAVE THAT NOW, AND THEY CAN REFUSE TO PUT IN THE LIFT, which could delay everything by six months or more.  The current deck must be demolished. It seems that what is here is original to the house. We have rotting and peeling wood which has weakened over the years, and isn’t even well secured to the house any more.
All of the concrete footings are cracked as well.

 A new, powered, covered, securely affixed deck must be built if at all possible BEFORD THE LIFT ARRIVES.  Estimates for the deck work are in the area of $10,000 as well for supplies and labor, bringing the total so far to $18,000.

  The new lift and deck will benefit not only me, but also Meg as well.  Hopefully she will continue to be able to do stairs, since we have  six from the front door to the living area of the house. She frequently injures her ankles though, especially the left which is a non-union now from being injured so often.   Having a lift will facilitate her entry when she is in the almost semi-annual boot or cast.  Her wheelchair will also be better cared for as now it can be kept out of the elements and charged in a more temperature-controlled, covered environment, miles better than a grill cover on the patio.

THAT STILL ONLY MEETS HALF OF THE CRITERIA TO GET MY WHEELCHAIR, since I still need accessible transportation.  To accommodate Meg's wheelchair, plus our large family, I currently drive a Ford E-350 retired airport limo from which we have removed the back seats to fit a lift and wheelchair.  The lift, however, is aging and needs replacement, and there is no way to remove it without extreme damage to the car as it was heat-sealed in at installation.  Also, it may well not be compatible with my new wheelchair.  A new vehicle, or new-to-us vehicle must be found which has securements for two wheelchairs, plus seating for six passengers, and hopefully some room for "stuff" as well.  We have no idea how much this will cost, or to be honest, exactly what the wheelchair manufacturer’s consider to be 'acceptable' and 'accessible'.  

Any and all monies donated will be accepted with great thanks, and you can be assured of careful stewardship in our handling of your trusts.  Money will first go to the payment for the lift, as we are already committed to its purchase and installation in the yard, even if at the immediate first moment it isn't fully useable.  Next, funds would be put toward the demolition of the old, and rebuilding of the new deck.  Material donations are being sought, and volunteers are being recruited to help with labor to make the funding stretch, so again, we are doing EVERYGHING we can to handle gifts responsibly.

  As you can see, in giving to this cause, the primary beneficiary may be me, Rebecca Statz, in getting the wheelchair I need, but the benefits will, reach beyond me, throughout the whole family.  Being able to actually get the wheelchair into the living area of the house instead of having to 'check it at the door' will be so wonderful; to perhaps be able to cook dinner some time again rather than just watch as my husband makes it because I can't stand that long, and maybe let him sit after a long day.  To let my kids play as long as they want on the playground and not rush off because my legs are too tired to stand anymore.  These are some of the dreams I have.  Please help me get there from here.