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Dear Family and Friends,
My daughter Jennifer was born with multiple birth defects, and two of her main health concerns growing up were polycystic kidney disease and chronic pancreatitis. The first twelve years of Jennifer’s life were spent in and out of hospitals for treatments and undergoing a total of twenty surgeries throughout her life.
Through all of this Jennifer went to school, sometimes home schooling in the hospital so she could keep up with peers. She was dedicated to focusing most of her energy on school; she has a lifelong love of education.
At just 12 years old, Jennifer went into kidney failure and had to begin dialysis. Luckily, Jennifer and I were a blood match and she was able to receive her first kidney transplant from me six months after starting dialysis. Unfortunately, due to some of the medications for her transplant she formed an abscess that forced her doctors to remove her spleen and part of her pancreas. Due to this complication Jennifer became a type 1 diabetic.
Still, she was able to return to school and was a normal boy band loving, chatty, energetic teenager who loved theatre and dance. She continued to excel in school and graduated with an advanced diploma and cords in the performing arts.
After some time off she went on to attend UNLV to major in journalism with a minor in women studies and creative writing, all while volunteering at the local women’s center.
Sadly, within the last year we received news that after 14 successful years, Jennifer’s kidney has failed and she will need a new kidney along with a new pancreas. Jennifer keeps involved with friends and activities despite her illness and cannot wait to get back to school and volunteer work.
We have been very lucky that Jennifer has three donors being tested; however this transplant will be extremely expensive. Even with insurance, there will be countless doctor visits, insurance premiums, travel to and from the transplant center, and the costly immunosuppressant medications Jennifer will have to take for the rest of her life.
To ease this financial burden, a fundraising campaign in Jennifer’s honor has been established with HelpHOPELive, a nonprofit organization that has been assisting the transplant community for 30 years. All donations are tax-deductible, are held by HelpHOPELive in the Southwest Kidney/Pancreas Transplant Fund, and are administered by HelpHOPELive for transplant-related expenses only. Your contribution is greatly appreciated.Thank you in advance for your generosity and support.
Sincerely,
Karen Stiles
(Jennifer’s Mother)
702-219-6942
The second life of Jenny Stiles: Battling illness in the digital age
The 26-year-old has been fighting to survive since her first breaths. Now, she has taken the battle online
http://www.lasvegasweekly.com/news/2013/dec/05/second-life-jenny-stiles-battling-illness-digital-/#/0
Had a visit from my doctor today on dialysis, this is what we discussed. I've been doing perfect with my diet all those levels are right where they should be. On the other hand my blood pressure has been going out of control which is exactly what happened last time I was on dialysis. We are going to try to switch around some of my meds for the time being and hope it helps. Unfortunately I am also suffering from a low blood count and very low iron. If it that doesn't get better I will have to get a blood transfusion which will make it harder for me to get my transplant. I am also not getting the full effects of dialysis, my doctor thinks it's from all of the problems I am currently having. With a low blood count and high blood pressure they are unable to bring up the speed of the dialysis without it being dangerous. Hopfully in the next week or so we will know where everything stands. Until then just have to keep going forward till I get my match.
Testing
At the moment all three of my donors are on their way to getting tested. One has already tested to match she just needs to get her physical exam. They will be testing the other two to see if they are a better match. I will be finishing my last test to be evaluated for transplant this week and then I will be entered into the transplant program at Ceders Sinai.
Health update
After going to the doctor today I have some news on my condition. We are starting to prepare for dialysis we were trying to avoid it since I had two grand mal seizures last last time I was on dialysis.
We are hoping I can do treatment at home since I will have to be hooked up to the machine for 2-5 hours 5 days a week. I will be making an appt soon with the surgeon to see about getting a fistula which is the implant that is used to perform dialysis. I will also most likely get a port cath so that I still have an access point for IVs in case of emergency. Overall it's been a stressful week knowing I will be starting dialysis again which is my greatest fear. But if this is the path I have to take to feel better again to be able to do the things I love again it's all worth it.
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Good news
It's been a full couple of weeks lately. I've got a lot of news on the transplant front. I learned recently I have been fully accepted into the kidney transplant program at Ceders. I will be listed on the national UNOS list until all of my donors are test and we sure I have a match. On the donor front I am so thankful to announce that I recently had another donor step forward to get tested. I now have four donors who are on there way to getting tested. One of my other donors finished preliminary testing and will be going to Ceders for her full work up soon. Over all things are looking up. My mom will be having her first fundraiser at work Labor Day weekend. Then more public events will be announced soon. Thank you all for your support.
Jenny
Dear Jennifer - Just wanted you to know that you are in my thoughts and prayers. I am another cousin of yours, Cherie Alvarez (Stiles). I am so sorry to hear about what you are going through and for how long you have been enduring all your health problems. I am very happy to be able to help you out and look forward to meeting you. Much love, Cherie
Cherie Alvarez (Stiles)
Dear Jennifer:
It's been a number of years since we've seen each other, but I always think of you. Do you remember when you lived in Mass., I think it was for about 2 months. At that time you got to know my son Justin, he's about 6 years older then you and you were so taken by him you used to hold his hand and look up into his face and you'd say to him "you're my hero!", I think now you are our hero.
I made a donation to help you reach your goal of $20,000, it is on behalf of your Aunts Kathleen and Helen and myself.
I'm sorry I wasn't able to be a candidate to donate a kidney for you. Hold strong you will get what you need.
I hope you know you're family on the east coast thinks of you often and has throughout your whole life.
All our love,
Aunt Kathleen, Aunt Helen & Karen
Karen Dupuis
Dear Jenny ~ you won’t remember me, but I’m your cousin, Patti Nordquist (formerly Stiles). Your father is my uncle, even though I am a year and a month older than he is! My father, who passed away, was your Uncle Clinton. I talk quite often with your Uncle Jim (or should I say “Uncle Yoyo”?), and I’ve been able to find out how you’ve been doing throughout the years. I saw you one time before you and your parents moved to Las Vegas, and I knew when I first laid eyes on you that you were very special. I have two sons ~ Garrett who is 31, and Chase who is 28. They were both with me when I saw you on that wonderful day. I heard that you and your parents need some financial help to get you through your next challenge. So, I am so happy to be able to help by sending you some money that I know will be put to good use. Please know that you have always been in my thoughts throughout your life, and I am so impressed by the way that you have managed your condition. I also know that your parents are very special too for taking such good care of you. I can’t wait to hear from “Uncle Yoyo” that you are on the road to recovery, since I speak to him quite often. I love you, Patti
Patti Nordquist
Hi Jenny. I'm your cousin Cindy. My dad was Clinton Stiles. I only met you once when you lived in Maywood, NJ but you were much too young to remember. I'm so sorry to hear of the extent of your illness and realize that the financial burden can be daunting to say the very least. I hope from the bottom of my heart that your health improves. From reading your story, I find you to be an amazing young woman and hope to meet you in person one day. Much love.
Cindy (Stiles) Bush
I love you Jenny! You are a true inspiration.
Karina Calderon
good luck on you trip.
john davis
Dear Jenny, You are an inspiration. I enjoyed our visit. I will do my part to help out. My wish for you is health and happiness and strength.
Heidi Mancini
Heidi Mancini
You are a symbol of courage and dignity for us all. Your wonderful bright outlook on life is uplifting and worthy of emulation.We wish you all the best of luck and happiness.
Judy & Jon
Your courage is inspiring , my Christmas wish is to help you! Ill be sending my check
Mary Padlak
We admire your strength and courage. We are proud to support you.
Morris Family
Read your story in Vegas Weekly. Wish you all the best and keep God 1st....!
Rich- Henderson NV
I will work my hardest to help out any way I can!
Hope Placer Pensacola, FL
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Jennifer Stiles
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
Donor preference is important to us. Please specify in writing if you wish for your name or donation amount to be kept private.
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