The Myelin Project is grateful to all families who are willing to share their stories and awed by their courage to stand out and be counted, even in their time of great loss.

If you would like to add a personal tribute to this page click here.

Angel Hayley

When Hayley was born on August 19, 2002 - she was an answer to prayers for her parents and adoring grandma. They had been hoping for a girl and she could not be more perfect. She developed quickly and her family envisioned what great accomplishments Hayley will be achieving in her future. However, at eight months of age, everything changed and at age 1 year and 3 days, Hayley was among the angels.

Christopher Andrew Keenan

In the loving words of his family: "Christopher was a bright, lively boy who was loved by everyone who ever met him. His personal charm and charisma was unique and special and he had a way of making people happy and - he was our life. In June 2004, Christopher was diagnosed with Adrenoleukodystrophy (ALD) and our lives were torn apart. At this time, he looked like any other healthy little boy who loved swimming and playing his game boy. But, in order to save his life and rid his body of ALD, he needed a stem cell transplant. You are welcomed to view Christopher's website and learn more about his brave battle. Christopher fought like a hero but the disease was too far gone and the transplant was not a cure for us as he became unable to walk, communicate and eat - and the spirit and uniqueness of Christopher was taken from us. We took our precious boy home, to his beloved Scotland one last time and he travelled with the Angels on 7th March 2005 (at age 10 years old).

We know he is at peace now running and playing again - free of the curse of ALD. We feel his presence around us every day and it gives us strength to go on and continue the fight for a cure.

We miss him very much and a void has been left in our hearts that will never mend until we can hold him in our arms again."

Hunter Kelly

On August 5, 2005 the world said goodbye to Hunter (at age 8) as he passed away after his long battle with Krabbe's Disease (Globoid Leukodystrophy.)

Hunter Kelly (the brave son of American Hall of Fame Footballer, Jim Kelly and his wife, Jill) was born in 1997 and was not expected to live past the age of 3. However, his courage and the love of his parents were the inspiration for the Krabbe's Research and Support organisation, Hunter's Hope (see links page).

Jim and Jill Kelly, as well as all the Krabbes' families, vow to continue their fight against Krabbes, in Hunter's memory and honour.

See Hunter's story at: http://www.huntershope.org. Also, to better understand our desperate race against time and see a fraction of the total number of lives you can help save, please visit www.krabbes.com

Tracy Hart

In the words of Tracy's mother, "I know everyone must say this about their loved ones when they are gone, but Tracy was such an inspiration to her family and her friends, with the way she dealt with her illness (Multiple Sclerosis). It never defined her, it only annoyed her! She was brave and beautiful and we shall all miss her very much."

The Myelin Project would like to thank Tracy's family and friends, whom in her memory have made a donation to help continue on with Tracy's dream of helping The Myelin Project find a breakthrough for this dreadful and deadly disease.

Breanna Corinne Arthurs

Breanna was born on September 19, 2002. Although she was a beautiful baby and perfect to her family, her parents knew something was not right, from the very beginning. Breanna never hit any of her milestones, she never gained the ability to hold up her own head and had major eating problems. At four months old, her family started a very long and emotional journey to find a doctor and help for their daughter.

At ten months old, they finally had a partial diagnosis that it was probably a leukodystrophy, all which are fatal. At 16 months, they learned it was Globoid Cell Leukodystrophy. Breanna gave a very strong and admirable battle against her diseases, yet on January 18th, 2005 (age 2 yrs 3 months)- the battle was over.

Angel Breanna is now soaring high and Krabbes free, if you would like to know more of her story, help bring about new-born screening in Canada or make a difference for all leukodystrophy children, please visit: www.breannasdream.com

Angel Eden

Eden was born on November 28, 2001 and was diagnosed with Krabbe Leukodystrophy on March 28, 2002. Eden lost her battle on October 31st, 2002 - only 11 months old. However, for such a young child, she taught her family more about life and love in those precious 11 months than most can learn in 11 lifetimes.

It is through this great love that her parents continue on, in her memory and her honour, to make a difference - so that no other family has to face their ordeal, nor have any more children be lost before they even begin living.

In the words of her parents: "Every moment we had with her is so precious. Thank you, little one, for being in our lives. You are in our hearts, forever and always. We miss you very much."

To find how she got Krabbe's and the symptoms, and learn more, please visit her website: www.caringbridge.org/me/edenskyy

Christopher Lawler

I had the honour of an invitation from Beryl, Christopher's mother, to visit with Christopher and Beryl at the care home near Rochdale.

When I met Christopher, MS had already stolen his body's tall, strong stature and he was wheelchair bound. I could still imagine the striking figure he must of struck in his police uniform on the beat in Manchester. However, the once bellowing voice of authority was reduced to a mere whisper when he was finally able to form a word or two.

I was touched by the loving care his mother gave him every day as she drove out to visit with him, yet, I was struck by the irony that a mother was caring for her son and not the other way around. We spoke of Christopher's determination and drive to beat MS and how we might accomplish this together.

Unfortunately, two weeks later, I received another invitation from Christopher's mother, this one was to his funeral.... We promise to keep the fight going Christopher!