We made up this letter to send to various people (family, friends, businesses) to ask for donations so we can buy a van that can be converted to wheelchair accessible for me. Most everything is explained in the letter. I will not be leaving my address in the letter, however, you can email me to ask for it. I'm going to stick a Paypal link up here as well, just in case people want to go that route. I will probably be emailing this out to some friends so if you see it twice, well, I guess you see it twice. My email is morrigan @ gmail . com without the spaces of course. This the PayPal link if you want to go that route.
My name is Kristy Penner. I am 31 years old and live at home with my parents in Saskatoon. I have Pompe’s Disease. This is a degenerative muscle condition, a rare form of Muscular Dystrophy. My mother is my primary caregiver and I am subsidized for care-givers by a government funded program. Due to my condition, I am wheelchair bound, have a tracheotomy, am respirator dependent and often suffer from sever fatigue and pain. Hence, my outings are limited. Furthermore, when I have an opportunity to leave the home, it is crucial that I have direct, prompt, reliable transportation back home in the event that I need to perform suctioning on myself. Not doing so would result in my not being able to breathe.
Prior to being wheelchair bound, I experienced a fulfilling and abundant lifestyle. I attended the University of Saskatchewan, had a very active social life and developed many special friendships. At one point in my life I was engaged to be married and lived in my own home. With the deterioration of my disease I was forced to move in with my parents and became dependent on them. I suffered through my illness and depression. Subsequently my fiancé and I separated. After receiving counseling and accepting my illness, I was eager to start a new life. I was positive and hopeful. Dr. Casey, the geneticist that diagnosed me, was a true hero of mine throughout the many treatments I received. I attempted to meet new friends and go on outings, however I was unable to secure reliable transportation. As a result, my friendships started to fade as I became housebound.
I have access to Public Wheelchair Conveyance, (a.k.a. hand-bus) however this service requires 3 days advanced booking, times are approximate and the routes fluctuate. If the handi-bus has multiple bookings I am not guaranteed a direct ride home. If I feel fatigue or need to suction, I would not make it home quickly enough. I have access to city taxi cabs ( a.k.a. handi-van) however, they are expensive and unreliable. For example, if I book a handivan for 2:00 p.m., it may not arrive until 2:30 p.m. Furthermore, they cannot guarantee a return ride home at a specific time since there are a limited number of hand-vans. If I am fortunate enough to take a hand-van, it costs me $30.00 minimum (return trip). On October 30th, 2006, some friends, family and caregivers planned a birthday celebration for me at a local establishment. They reserved tables and pre-ordered food and beverages. I was so excited to have an opportunity to leave the house. I booked a handi-van 2 days in advance. I arranged to have my hair and make up done, as well as dressing up in my favorite outfit for this event. Approximately 30 minutes before my ‘pre-booked’ pick up time, the cab company phoned and informed me that they would have to cancel my ride. A driver had called in sick and no one was available that was adequately trained to operate the wheelchair lock in the hand-van. This was devastating for me, not to mention the inconvenience to the people responsible for planning the event.
Public transportation is virtually impossible to obtain. I am writing this letter in hopes of receiving financial support to purchase a mini-van. This would enhance my quality of life and provide vast opportunities for social and intellectual growth. Just recently, I attended a 6 week program through Partners for Employment. They completed various physical and mental aptitude tests. The test results indicated that my intellectual abilities were extremely strong. If I had personal transportation, I could seek out employment and better my life. In addition, my parents, friends or caregivers would be able to drive me anywhere I wanted to go. I could meet friends, go on outings and have some level of independence and freedom.
After extensive research and planning, my parents and I have developed the following goal: A Grand Caravan from Dodge City would cost approximately $25,000.00. We are planning a press release with The Star Phoenix once we have the necessary funding. Any donations toward obtaining this goal would be greatly appreciated. No amount is too big or too small. My ultimate goal is to enhance my quality of life. Kinsmen Telemiracle has approved the cost of the conversion once we have the van. In the event I do not require personal transportation, my family will donate the mini-van to someone who has similar needs or to the Muscular Dystrophy Association.
Thank you very much for your time and consideration.