CASE EXAMPLES

Vicki S.

Vicki is a 15-year-old young lady who lives with her mother and younger sister in a small New Hampshire town. Vicki has cystic fibrosis. Although her mother does the best she can to provide for her small family, she has frequently been unable to work due to health problems of her own. When she does work, the income is modest. Vicki's doctor, Dr. Stephen Grandgeorge, has described Vicki as "a fine young lady who has demonstrated remarkable poise and fortitude. She has often been her own best care-provider. Vicki has been a prime candidate for a lung transplant."

Following the lung transplantation operation at Boston Children's Hospital, it was necessary for Vicki to stay in the Boston area for post-operative care and observation. Her mother, grandmother and little sister could not afford to make the daily trips to Boston to be with her or to stay with Vicki for several nights after the operation. "Karen's Climb" assisted with these expenses, thus relieving the family of the pressures associated with them. Vicki is now well on the way to recovery and a much more optimistic future.

Madeleine C.

Madeleine Carver was an 18 year old woman when she gave birth to Celia, a little girl with cystic fibrosis. Within a few short days of the birth, without warning, Madeleine suffered a heart attack and died. Neither she nor her live-in boyfriend, Celia's father, had insurance. He had just gotten a job as a truck driver in a small town in Vermont but still had no insurance. Although there was some Medicaid coverage for the baby, the immediate problem was Madeleine's funeral expenses, which were in the $5000 range. A donation from "Karen's Climb", coupled with contributions from family members and the community in general reduced the out-of-pocket expenses for this devastated family to $500. We also made arrangements with the local social worker to contact us as family needs associated with cystic fibrosis arise.

Ward & Susan J.

Ward and Susan have 4 children and a grandchild living with them in Milford. Two children, Scott, aged 20 and Jamie, aged 9, have cystic fibrosis. Ward was recently laid off from a job he held for many years. He currently works at an entry level job that nets about $250/week, about half of his former income, of which $150 goes to buy the food needed to provide a 6000 calorie per day diet for the two children with CF.

When their social services worker contact us, the family had several outstanding debts, including telephone and electrical bills. But their most pressing problem was the cost of food relative to their disposable income. Ward had applied for several higher paying jobs, including a night job driving fork lift or something similar at Wal-Mart; he had not heard the results at that time.

They had applied for Supplemental Security Income (SSI) and Medicaid for Scott but had not received the results. When Scott turns 21, he will be on his own, but is unable to find much in the way of work as he is often hospitalized for two-three weeks at a time; he had just been released from a three week hospitalization.

Based on the recommendation of the social worker, "Karen's Climb" arranged for $500 in food certificates at a local Supermarket. Although this was at best a short-term fix, it did help Ward and Susan get through a very rough spot. Fortunately, their community was also very supportive in providing on-going support for food and other essentials.

Sharon A.

Sharon is a 20 year old mother with a young baby. Sharon has cystic fibrosis. Due to severe depression associated with her illness, she is unable to work at this time. She lives in the Lakes Region, with the baby's father. Their total income is approximately $1400 monthly. They have no insurance coverage. Due to her depression, she is need of counseling, in the hope she will be able to be able to return to school and/or work in order to become more self sufficient. Sharon's social worker from the NH Adult CF Program-Lebanon requested that "Karen's Climb" fund 12 sessions of counseling for a cost of about $420. We were pleased to be able to do this.

 LETTERS FROM CLIENTS

Betsy and Liv Huntington

Betsy Huntington is the single mother of an 8 month old little girl, Olivia, who has been diagnosed with cystic fibrosis. She has requested that we share her letter of thanks to supporters of Karen's Climb Foundation, so that you will know how you have made a difference in their lives. She wrote:

I will send another e-mail with my bills' information. But before I do that, please let me tell you how in awe I am. After you told me yesterday that you were able to "wipe my slate clean," I got off the phone with you and cried my heart out. How is it possible that there are people like you and the other executives involved with Karen's Climb? How are there people who offer help with open arms? I cry now as I write this.

I had lost all faith in humanity. I had learned that people don't help unless it benefits them in some way. People hurt other people. But you have shown me different. Please forward this to your other colleagues responsible for helping me and my little angel girl in our time of desperate crisis. For them, let me tell a little about us, as I have already told you: I am a 23 year old young woman. I live like I'm 40! I once put myself through 2 years of college by working three jobs and going to school full time. I entered the corporate world where I traveled around the country on city tours for nearly three years. I was a success! I had a new car, an apartment, a career.

When I became pregnant, my partner (and co-worker) abandoned me when I refused to abort. He made my workplace a place of evil and humiliation as everyone watched my tummy grow.

As a single parent, I began to lose control when my beautiful newborn baby girl was severely ill since birth and would not gain weight. She was diagnosed at three months with CF. I tried to go back to that evil workplace and worked day, night, and weekends to try to support us. But my little red-headed Olivia was just too sick. As a result I was often out of the office, and lost my job.

Her biological father is on the run, last in Tennessee. He is in contempt of three court orders, and I go to court again next week. Receiving no child support.

I am now entertaining visiting nurses, developmental early intervention specialists, social workers, pulmonary specialists, pediatricians, nutritionists, and now neurologists due to Olivia's undiagnosed seizures. I lost my apartment and was forced to be a burden in my mother's home. She cannot help us financially.

All of my bills have piled and the daily harassment for payment has begun. Afraid to lose my car, to get us to doctors over an hour away. Somehow we survive on food stamps, and have received an occasional voucher for food and diapers from the town. I await a decision from SSI, and cannot receive AFDC because of the pending two thousand dollar settlement in arrears that Olivia's biological father owes. So we have survived by the grace of God.

Then all of a sudden I got a call from [Karen's Climb volunteer] Laura. She became a friend to me and an advocate to help me and my little Liv. Ironic that I call her "Liv", isn't it? The very next day (only yesterday) Laura informed me that she could help with my major bills and give me a chance to prepare for our future.

I write all of this to give you feedback. To let you know that what you're doing to help us will change our lives. You all have given me faith in people again. You have unselfishly volunteered to help a stranger in her time of need. And you should know that you have touched my soul, and that Olivia and I intend to be a vital contributor to Karen's Climb in our future years, whether it be through volunteering, or one day to help you, financially. Thank you for making this disease not so deadly to our lives. Now we have a chance to catch up instead of always being behind.

Feel free to contact me. In fact, I would welcome it.

Bless you,

Betsy and Liv Huntington

The Alexander Family

October 19, 1998

Living a Year with Cystic Fibrosis
by The Alexanders - John, Linda & Annie

Karen's Climb means a lot of things to different people - for some it's financial assistance, for others it's a matter of life and death. For us, Karen's Climb is the moral support and the comfort in knowing we are not alone.

We were the fortunate recipients of the Karen's Climb Quilt during the 1997 Karen's Climb event. Since that time, the Quilt has witnessed a variety of things within the Alexander Household, including one of our more challenging years with regards to cystic fibrosis. Just having the Quilt there helped us to cope and know we were not experiencing things by ourselves - there are others out there who do understand. (Thank you, [Karen's Climb volunteer] Janet Fee, for listening and offering advice during all those phone calls I made to you!)

We know that CF affects the lung and digestive systems in the majority of its patients. Annie's lung disease has already (in her 10 years) given her daily medications, two hospitalizations, and chest physical therapy. For the digestive, all she has really had to do is take enzymes every time she eats. (Oh yeah, we can't forget about her bowel re-section when she was just four days old). Well, this year we were faced with the eating part of cystic fibrosis - we had no idea how time consuming some things could be, such as tracking calories, pill swallowing, taking vitamins, doctor's visits, and coming up with creative meals. And I do say "WE" - this affects the whole family.

The Quilt has witnessed Annie work very hard to gain weight and maintain nutritional status. It saw the Alexander's (plus Annie's best friend, Carly) go to Disney World in Florida (a dream come true). John was promoted and has new job responsibilities. Linda also experienced a job change, and Annie turned 10 years old and entered the 4th grade. The Quilt was also there for us when Annie's Grandma Haines passed away just a month ago.

Cystic fibrosis can be a curse and a blessing. We would drive ourselves crazy asking why our daughter - as someone said - why not her? These things happen. Our motto in living life is: Until the disease dictates otherwise, we will not let CF rule our lives. Annie will go about her daily life as a normal, healthy child and experience all the wonderful things children should. We will continue to work her medicinal routines around her fun, school commitments, and our family routine. And John and I have learned something that some parents learn too late - we will never, ever take our child for granted.

Rose O'Keefe

When I was 23 I had a sudden onset of what seemed to be a severe flu. For nearly 2 years I wasted away to the point where at times I did not even recognize myself. I had gone from a strong, healthy, energetic, and independent person who thoroughly enjoyed caring for others as a nurse -- to a weak, sick, fatigued, and eventually dependent person who could at times no longer care for herself. As every day passed while undiagnosed, I lost a little bit of myself. I willingly endured many painful and unpleasant procedures only hoping that they would find an answer. But every test was normal, there were no answers, and I was thought to be crazy. Eventually I lost my job and was considered "disabled". I felt too young to be disabled, but my body did not agree. After the numerous tests, procedures and surgery were over, they told me they had done all that they could do and found nothing. I was angry! This does not happen for no reason -- there had to be a reason! It hurt to walk. I was in pain. I spent hours a day in the bathroom and each day everyday for nearly two years I faded away. I insisted with my primary care physician that I be tested for food allergies. It had to be something I was eating. I had checked and rechecked every other aspect of my life. I was fine if I did not eat but once I ate it was like I had been poisoned.

I thank God every day I was sent to the incredible physician, Dr. Grandgeorge. I showed up begging this man to find something wrong with me -- something I could put my finger on -- a name for what had happened to me 2 years ago to make me what I had become. I sat and cried when he told me I had no food allergies. I am sure I am one of the first people who has ever had that reaction to such news. He had me describe in detail what happens to me physically when I get ill over and over -- then his face changed and he said he would test me for Cystic Fibrosis. We discussed that it was unlikely that this would ever be a diagnosis because I had been so healthy, always been obese although I had lost 40 pounds from illness to that point and well, it was just unlikely. Test = positive, tested again and it was positive. My nightmare was over in a way. I had an answer ... but this answer had no cure. After starting on medications physically I started to feel alive. It had been so long since I could say that! Emotionally I was kind of numb for a bit. I had fought for so long to keep my head above water -- to get through a day knowing that someday ... someday they would find out what was wrong with me and I would be OK. To find out what was wrong, knowing that I would never be the person I once was.

The first year I was filled with a mix of anger and fear. I was angry at how much had to be endured before this diagnosis and how ignorant some were along the way. I was afraid of never living any better than I had been living for the past couple years. I was so focused on how I was going to die with CF that I guess that was easier at the time, than to figure out how I was going to live with CF. I felt that this disease had taken my life as it had taken my health and that I had no control. It is hard to control something that others can't see and only you can feel ... so somewhere along the line I decided that I and only I had control over my thoughts and how I dealt with the symptoms of my disease on a daily basis. I could let it happen or I could take control of how I saw and handled my disease. For the first time in my life I became interested in exercise that would help me to hang on to the lung capacity I had and build strength etc. ... This was when I turned the corner. Financially I could not afford to pay for membership to a health club -- that is when I learned about Karen's Climb. I heard the story of Karen, learned that she was the same age as I was at that time when she passed away (26), and I kind of felt in my heart that that was one of many signs. I joined the facility [Karen's Climb Foundation paid all of the fitness club fees]and built up strength not only physically, but even more so emotionally. For the first time in a long time I felt strong and in control and I don't believe that I would have been able to do this on my own. I will always credit Karen's Climb in part for helping me to take control back in my life.

The whole point is ... that I do dream. I used to be so afraid to look ahead for fear of my future -- I now look forward to every new day with an appreciation for life, warm hands, and kind faces. I do dream once again. I look forward to my upcoming wedding when I will marry my best friend -- who has been there every step of the way and I think is proud in rebuilding my life since my diagnosis. I hope to have a family, live to an old age and someday meet my children's children.

Every day is a challenge - some days that is putting it kindly. Never knowing how I will feel when I wake up -- will I get sick -- the unpredictability. I have slowly built up some trust in myself and in my body and just do the best I can. Some days I feel nothing and I hang on tight to those days ... other days I feel so much ... too much to the point where I don't know if I can make it. But I always do -- and at the end of that day I look back and feel proud to have made it through, because with every day I get a little stronger. And tomorrow might just be a little easier because of today.