The Stars Above

 

 

 

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 the could not here on Earth.

 

In Loving Memory

Meghan Elyse Fruchter
1985-2014

Thomas D. Mahar. Jr.

Mary Hogan

It is with great sadness we let you know of the passing of our dear friend, counsel and founding board member of XPS. Thomas D. Mahar , Jr., left this world on August 11 after a long illness. His humor, strong constitution for right and his wise heart will be greatly missed. In lieu of flowers, his family has requested that donations may be made in his memory to XPS. In 2008, Tom was honored by this organization for his lifetime of service to the XP Society in addition to celebrating a lifetime of service to the community through his work as an attorney. We will greatly miss Tom and wish his family strength through this very sad time. Read more about Tom here.

Mary Hogan, aunt to founder Daniel Mahar, passed away on October 31, 2014 with her family by her side. She loved her five children and their families, her Irish heritage, Notre dame, the NY Yankees and the NY Giants. She has gone to join her husband of 50 years, Bill Hogan who left this world before her. Born on Christmas Day, Mary was a real gift to not only her parents, but to everyone who knew her. Her intelligence and wit were sometimes hidden by her obvious grace and dignity. Mary and her family have always been generous with their gifts of time and monetary donations to Camp Sundown.

We will miss you very much Aunt Mary!

Linda "Peanut" Diehl
1944-2010

Silently, one by one, in the infinite meadows of heaven, Blossomed the lovely stars, the forget-me-nots of the angels.

- Henry Wadsworth Longfellow

Kevin Charles Swinney
1974-2010

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. 

 

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.) 

 

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.

It is with a very heavy heart that we say goodbye to a dear friend, Meghan. To anyone who has ever been to, heard of, or seen Camp Sundown in action, you no doubt met Meghan in one form or another over the last nineteen years. She started as a camper coming with her family and has spent the last many years as a vital and integral part of how the whole program functions.  From being “Queen of the Laundry Room” to organizing activities, games, awards around the campfire, Meghan shared with all of us her talents, creativity, caring and thoughtful spirit , always with her big smile and “hey, I got you” giggle. Her presence is very visible in the artwork of the poolroom, her “hobo” hotel, the hogwarts and school bus props, the glow in the dark twister game.  It is so very hard to fathom her not being here, and we will expand on this portrait of Meghan in the upcoming weeks, but for now we want to say we love you, miss you and will never forget your beautiful soul, Meghan.

 

At the request of Meghan’s loving family, a donation to Camp Sundown in Meghan’s memory can be made out to “XP Society” with “Meghan” in the memo and sent to: XP Society/437 Snydertown Rd, /Craryville, NY 12521. Donations will be used for Camp Sundown, of which Meghan was a critical part.   Donations will be acknowledged and Meghan’s family will be notified of your thoughtful generosity. Thank you.

 

Amanda was one of the eight original families that attended Camp Sundown our first year in 1996 and in 1997. After that, her health declined and she was unable to travel to attend Camp Sundown.

 

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. - Dan Mahar

 

Amanda
1989-2007

Linda Diehl brought laughter and love to everyone who knew her. As one of the four founding Camp Sundown Clowns, "Peanut" started working 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 read Linda’s obituary, click here.

 

We know Heaven gained a new star with Linda.

Vincentia Mahar

 

 

It is with great sadness we say farewell to Vincentia Mahar, mother of XPS president Daniel Mahar. We thank the family for thinking of Camp Sundown in their desire for memorial donations  to go to XPS in her honor. Read here.

It is with great sadness we tell you of the passing on January 15 of camper Shawn Galemore whose happy face was always a welcoming sight at Camp Sundown. Our thoughts and prayers are with his family and friends as we remember the shining light Shawn brought to all of us.

ADDRESS

437 Snydertown Road

Craryville, NY 12521, USA

 

Telephone: (518) 929-2174

 

Email: xps@xps.org

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Getting a rare disease diagnosis is terrifying for patients and their parents. You are not alone. We are here to support you and help you find the light in the darkness. The XP Society is a unique to the world program for children and families who can never be in daylight. We help provide the XP family support, information and the informative foundation on which to build a healthy and happy quality of life.

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© 2015 by Xeroderma Pigmentosum Society