Hope. Compassion. Joy. One Boy’s Inspiring Story
Meet Jake Hytken and learn what brought him out of deep depression
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In His Own Words…
My name is Jake Hytken, I am 18 years old, and I have a story to tell. I was born with an undiagnosable form of Muscular Dystrophy and the doctors were in the dark about what to expect.
In addition to MD, I also have Gaucher’s Disease, a Jewish genetically inherited disease that my brother has as well.
I always thought my medical condition through my eyes was relatively easy to handle during my earlier years. I was weak, walked with a wobble, and was exhausted by the end of the day.
I could not run, climb or play with my friends on a baseball team, or any sports teams at all, much less, go to sleep away camp.
I didn’t understand what the big deal was and why my mom wouldn’t let me go. I thought I was ‘normal.” A young kid only sees things as black and white, and I was oblivious to the shades of grey that were the reality of my illness.
But when I turned 13, I was forced to really see all the shades of my illness as my muscles weren’t growing right and started contracting. I went into a wheelchair.
Still my friends remained the same, and I became the friend who screamed wildly from my wheelchair in the bleachers at their sporting events. My health continued to deteriorate.
Last year, doctors told me that because of my dissipating lung capacity, my life span would be dramatically shorter. Pretty tough words to hear at the tender age of 17.
In that instant, my life dreams were taken away from me. Career goals…..gone. Having children one day… poof! Gone. Having a life of chances to find someone to love…poof! Gone. At first, I went into a complete stage of denial, so much so that I would even wake up in the morning and expect to get up and walk. But slowly the reality seeped in, and I fell into a dark depression.
I learned about Chai Lifeline and Camp Simcha Special from a family friend. I had never met anyone who had a medical condition similar to mine, and I had doubts that I should even be considering going to such a camp. But deep down in my heart, I couldn’t avoid the reality anymore. The truth is, I am in a different place than my peers. I needed to be with others who understood my reality.
After hitting rock bottom and hearing the worst most possible news from my doctors, Camp Simcha Special brought me up from the depths of despair and gave me hope. Camp Simcha Special was where I started to live again.
Camp Simcha Special was a place that EXPLODED with an energy I have never known! The spirit, the excitement, the fun, the magic – I have never seen this level of pure, nonstop fun and joy! I also couldn’t get over the sheer beauty of the camp, the amazing land, and the beautiful lake I was on again and again in the speed boats and bumper boats.
Every day there were fun workshops like wood shop, leather, and pottery. But what was far more special than these workshops was the kids. Some kids shared similar illnesses, and others stood alone with what they have, including myself; all of us had unique stories of our own roller coaster experiences that come from living with a serious illness. But coming to this camp was not about group time to share our story to help cope. This place was about giving kids who march in the face of illness every day 14 magical, wonderful days to simply live as normally as possible.
At Camp Simcha Special I felt normal, in large part, because of the staff. They all saw who we really are. No one ignored our medical situations because they lived side by side with us. But since every part of us was respectfully acknowledged, we were able to get past our limitations and talk about movies or sports or just tell jokes like every kid does.
I quickly became comfortable in my surroundings, a bit too much you might say. One night, late, I wanted to wish everyone “Goodbye,” because I would truly miss them all. So naturally it made sense for me to go on the intercom that travels through loud, loud, loud speakers. Sure it was for staff only, but I thought, “Hey, I’m ‘special.’ They won’t yell at me.”
Well, following my beautiful speech, and some angry visits and phone calls from some very upset camp neighbors, a red face Ari Dembitzer (boys’ head counselor) stormed into my bunk. After five minutes of ranting he stomped off. And I was thankful, yes thankful, because he yelled at me like he would have any other kid. Throughout my life, I could run into somebody with my wheelchair, and it was somehow (miraculously) their fault, but Dembi knew I was responsible… it was fantastic!
Chai Lifeline also helped make my dream come true last year. My school has a senior class trip every year to Europe and Israel. It is the highlight of our high school experience. This trip meant everything to me: my independence in the world and the opportunity to celebrate with my friends at the end of a very special journey together. To miss out on this trip would have been beyond devastating.
Because of my illness, I needed a full-time companion to help me through the journey. We could never afford this. Chai Lifeline sent a person with me to help me through the tough terrain of Prague, Poland, and Israel for six weeks. I am truly grateful for this.
Chai Lifeline has helped my family, too. For years my mom has been a single working mother. She is always fighting with insurance companies on behalf of my brother and me, and seeing to all of our needs; she is stressed out all the time. After we met Chai Lifeline, they stepped in to help and support her with these never-ending insurance battles for items that the insurance people don’t even consider necessary, like my wheelchair.
Chai Lifeline is an extension of my family. I keep in touch with a lot of counselors and staff, and my mom is in touch with the entire West Coast Region on a regular basis, often times just to vent. My mother says “My children are my soul, but Chai Lifeline is my heart and lungs that help keep me breathing.”
(Get involved with this worthy cause – donate or volunteer – the choice is yours – but DO something! You can learn more at their site: http://www.chailifeline.org/ ~Dee)
More about Chai Lifeline
The birthright of every child. Stolen by pediatric illness.
Since 1987, Chai Lifeline’s mission has been to restore the light of childhood to children whose innocence ended when life-threatening or lifelong illness was diagnosed.
Through programs that address the emotional, social, and financial needs of seriously ill children, their families, and communities, Chai Lifeline restores normalcy to family life, and better enables families to withstand the crises and challenges of serious pediatric illness.
Chai Lifeline’s guiding principles are
* That seriously ill children need and deserve as happy and normal a childhood as possible;
* That illness affects each member of the family;
* That the well-being of an ill child is impacted by the well-being of his or her family;
* That pediatric illness can have a devastating financial effect on families.
With this in mind, Chai Lifeline strives to
* Find ways to bring joy to the lives of our young patients and their families through creative, innovative, and effective family-centered programs, activities, and services;
* Engender hope and optimism in children, families, and communities;
* Educate and involve communities in caring for ill children and their families;
* Provide unparalleled support throughout the child’s illness, recovery, and beyond;
* Offer all services free of charge to ensure that every family has access to the programs it needs;
* Embody the ideals of compassion, kindness, and caring for others inherent in Jewish culture and life.
How Can You Help?
Volunteer…
Do you have a few hours to make a difference in the life of a child?
Volunteers are the heart and soul of Chai Lifeline. The hours they devote can change the experience of illness for a family.
We invite you to volunteer in any of the following areas:
Camp Simcha/Camp Simcha Special
Be part of the “best place on earth” for seriously ill children and teens.
Martha Prince 6xChai Volunteers
1. Visit hospitalized children (requires completed medical form).
2. Visit recuperating children and their siblings in their home.
3. Work on toy drives and organize and deliver holiday gift packages.
4. Prepare and/or deliver nutritious meals to hospitalized or recuperating children and their families.
5. Provide translation services during medical appointments.
6. Drive children and parents to medical appointments (requires completed transportation volunteer form).
Share your Judaic knowledge with hospitalized or recuperating children. Tutors coordinate work with children’s teachers and schools.
Learn more: http://www.chailife...ne.org/volunteer.php
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