They were here for such a short time, but they were the light of their families’ lives. Let them be stars that shine bright in the night and let them run and play under Heaven’s sun as they could not here on earth.
We say Goodbye to a loving friend of Camp Sundown
March 8, 1944- May 15, 2010
Peanut was one of the four founding Camp Sundown Clowns,
starting their work with Camp Sundown in 2004 . She helped bring sunshine to our campers for
many summers and will be dearly missed.
She shared her love of life and her vision of happiness with
all who were fortunate to know her, despite all the hardships in her own personal life.
In lieu of flowers, family and friends have asked that if you wish, you may make a contribution
in her memory to the XP Society. To learn more on Linda’s life, click on her name above.
We know Heaven gained a new star with Linda.
In Loving Memory of
Kevin Charles Swinney
January 12, 2010
Every now and then, we meet people who give us much more inspiration than they ever receive. At Camp Sundown, that person was Kevin.
Traveling from his home in Alabama each summer, Kevin would bring with him his own unique ability, through compassion and dignity, to make us each grateful to be alive and happy to be in his company. Born on April 22, 1974, Kevin was often our oldest camper, but always our youngest at heart.
His energy, enthusiasm and drive for life were matched only by his unyielding devotion to our Creator. Kevin was proud of his faith and it showed in every facet of his life. In addition to being a loveable counselor at Camp, he was a poignant speaker as shown by this interview for the Citrullo International film on XP and Camp Sundown coming this fall. (film clip)
Kevin loved making people happy and was very interested in becoming a professional clown soon. Our Camp Sundown clowns enjoyed his help on our weekly “shows” and also mentoring Kevin in technique and clown training opportunities.
An avid baseball fan, Kevin’s dreams came true this past summer thanks to Jason Zillo and the entire N.Y. Yankees organization who, as Kevin said, gave him the best summer of his life in the Camp Sundown night at the new Yankee Stadium . (Read about Jason’s Hope Week initiative here.) (Film Clip here)
Although we are very saddened to lose Kevin, the universe gained another bright star to guide us and Heaven gained a new angel to watch over our XP children, as Kevin himself did at Camp. Until we see you again, Kevin, please know we cherish the memory and the wonderful chance we had to know you.
A sad farewell to Lenis, our young friend from EL Salvador, who fought valiantly against cancers too numerous and vicious. With the help of many friends and family, Lenis saw the best doctors in trying to find relief of the constant pain she faced. Lenis left this world at 1am Christmas morning.
September 28, 1989- June 23, 2007
There are only a few of us who knew Amanda to begin with. She and her mom were one of the eight original families that attended Camp Sundown our first year in 1996, and then again in 1997. After that, Amanda’s declining health prohibited her travel abilities.
Amanda was one of the 20% of XP victims that suffer neurological complications. Indeed, hers were about the most challenging we have ever witnessed. When we knew her, she could walk with assistance and speak with certain sounds and hand gestures. Her mom knew every one of her emotions, and everything she was trying to say. I remember one evening at camp when Amanda didn’t seem quite herself. I asked if she were feeling alright. Her mom said, “Oh, she’s just angry at me because I told her she’d have to go to bed soon”. Another night, Amanda was all smiles, and big hugs for everyone…..Her mom said, “Now she’s just being a flirt”.
I didn’t know that Amanda’s birthday was September 28th until recently. Now, I’ll never forget it. That day is engraved on my wedding ring. The day Amanda was born, we were celebrating our 4th wedding anniversary. Caren and I had no clue then about XP, outside the fact that they were just two of the later letters in the alphabet. My, how things have changed.
It is, of course, with great sadness that I recall all the things Amanda had to do without. In all that sadness, though, a few other thoughts occurred to me. Amanda had no concept of money. Therefore, she was never bound by its temptations. She couldn’t know corruption, greed, or jealousy.
Amanda couldn’t know emotions like hate and mockery. She had no concept of war. She wouldn’t know how to ridicule, although her mom tells me she often received it.
The thought finally occurred to me that Amanda lived a perfect life. She went home to our creator, as pure and as beautiful as the day he first gave her to her mother. If only the rest of us couldn’t know what Amanda didn’t.
Thank you immensely to those who contributed to the monument at Amanda’s final resting place. Her mom is so grateful for the outpouring of love for Amanda and sends her thanks as well.
God bless you and your memory Amanda, and all the things you never knew.
Rachel and Chaim
CHAIM ALOUFI – 2 Iyar 57111 (8 May 1951) – 5 Tamuz 57631 (5 July 2003)
Today (2 February 2009) is 8 Shvat, Rachel’s birthday. She would have been 62, and I remember quite clearly the day I we went with our father to the hospital to bring her and our mother back home. She was a tiny baby, and she remained a small person all her life.
Chaim, who was born five and a half years later, was bigger baby then her. Both were blond who changed later to light brown. Both had freckles, like our mother and our cousins from her side of the family.
Both of them were enchanting babies, toddlers and young children. They were loved by everyone who knew them.
But even at their first years they were susceptible to the sun. We did not have a clue about the danger of the light, and in those years either of the sun. We live in a country where the sun shines 12 months, although in the winter we have cloudy days. As a baby and a toddler Rachel used to have blisters on her hands when she stayed out for to long, so after a while when she had to be outside she wore long sleeves. Lucky for her from when she was about two years old onward she did not need the long sleeves in the summer. Both of them did not suffer any skin problems from the sun and in the summer time they even got a nice tan.
I remember one summer all the family, with friends, spent Saturday on the beach. The next day both of them woke up not able to open their eyes.
Chaim was about three years old and Rachel 9 years old. For about two days they stayed in bed and we put cold wet towels on their eyes until the puffiness vanished. Now I know that the cause was XP, but at that time we thought that the cause of it was too much sun and that it can happen to anyone, we thought that I was spared because I relate to our father’s family and them to our mother’s family who has lighter skin coulor.
Apart for this episode, their childhood was the same as others, and we did not see any difference between them and the other children in the family or in the neighborhood. Any difference we noticed we attributed to their character. We did not know that it is influenced by XP. At that time no one knew about it.
Rachel did not like to study, and she finished her education when she was 17. Since than, until her retirement she worked at the water department in Netanya municipality. Many people used to tell us how helpful she was and how polite she is. Even today when I meet people who met her than they remember her politeness and her preparedness to help.
She was very disappointment that because she was under weight she could not do her army service, but she was very proud to be part of the reserve forces. She always told the story how at the first day of the Yom Kippur war she went to her base without any thought for the risks she took.
Chaim finished his high school education and did his army service. Now I know that some of his problems during this time were the result of XP.
When he finished his service he got a job at the Income Tax Department, where he worked until he had to retire because of XP. Like Rachel he was very well liked and the people who used to meet him there were telling us how polite he is and how helpful. At the Income Tax office in Netanya, where he used to work, he met his wife.
Chaim’s wedding took place in 25 December 1979 . His first daughter, Or-Lee, was born in 1986, and the younger, Yif’at, in 1988. Both are credit to their parents. I am always very sorry that he can not see them today. About 1-2 days before he died Or-Lee showed him her driver license and he was very proud that she got it the first try. He was very proud of their academic achievements, his favorite response when they brought home their school certificates was: boring, all the grades are the same (the highest grades I might add).
We discovered that they have XP by accident. Chaim’s wife noticed some changes in his behavior. One thing led to the other and in the end he was hospitalized in one of our best hospitals for tests and observation. The doctors immediately asked to see all the family members, and Rachel was hospitalized too. It took almost two years to diagnose them. We were lucky that one of the doctors who admitted them for tests and observation is The specialist for rare neurological diseases in Israel. They were diagnosed with XPF she was 49 and he 43. This kind, especially the one who erupts at an old age, has mainly neurological phenomena, the brain cells die. Because of that their memory and motor abilities deteriorated. The most interesting phenomenon was that while his motorial abilities deteriorated very quickly, his mental abilities were relatively in good shape till his dying day. On the other hand, she retained her motorial abilities until late in her life, while her mental abilities were deteriorating slowly but constantly. Because of that, she had a caregiver, Nelly from the Philippines, and she became very attached to her. Nelly stayed with us for seven years.
Both Chaim and Rachel died in their sleep. Chaim was in the hospital because of a severe infection. We think that he understood that he would not go back home but to a nursing home, thus he decided not to fight for his life and just gave in. He died on Saturday afternoon, and according to some tradition, those who died on Saturday are righteous person, which he was.
Because of the death of her brain cells, Rachel had difficulties swallowing and in danger of suffocating. Because of that, she spent the 10 last months of her life in a nursing home. All the people there, especially the personnel, liked her very much and took very good care of her. Toward the end, she had breathing problems and as a result died in her sleep.
I miss them both and think a lot about them.
Blessed be their memory, may their soul rest in peace.