Heartache to Hope
Category: General
It is with heavy hearts we release the news of the passing of two angels in our community.
7/16/02-2/24/16
A shooting star shines brilliantly but briefly...Our hearts are overcome with great sadness as our community has lost another angel to this devastating disorder. Thank you to the Stokes family for sharing Sophia's life with us. Her life will always be a reminder of strength, courage, perseverance and gentle grace. Please remember her parents, her siblings and family in your prayers in the days and weeks ahead.
A sweet tribute video was made for Sophia by her school. Please click here to watch.
Tristan Headlee
1/5/13-3/2/16
On Wednesday March 2nd, Tristan Headlee valiantly lost his battle with MTM and gained his angel wings. At 3 years old Tristan was a happy boy who, like most boys his age, enjoyed music and playing. He was dearly loved and will be very missed by many. His life significantly changed that of others, including Maggie DeLuna who said this: "To be with Tristan during his final days was an honor and a privilege. I had the opportunity to clean him, love on him, and kiss him goodbye. His life and existence has significantly impacted my own in ways that are indescribable. As I stood at his bedside there was a kind of peace that came over me- I realized and felt that Tristan was absolutely being greeted by all of our MTM/CNM children who have passed. I felt them waiting for him and that brought me so much comfort. No more tubes, no more infections, no more hardship. Tristan is now flying with the angels."
"We love you Monkey Doodles!" Grandmother Tina Watson
Please stay tuned, the second generation of the "International Family Registry for Centronuclear and Myotubular Myopathies" in collaboration with Alan Beggs PhD., Casie Genetti CGC, and NIH/NCATS GRDR will be release for an update soon requesting your response!!
News from the Scoggin Family:
As you may know, the dream we’ve had for decades is coming true. Researchers have developed a curative treatment for MTM that has been proven in mice and dogs! A gene replacement therapy developed in collaboration at Boston Children’s Hospital/Harvard Medical Center, Wake Forest Institute of Regenerative Medicine, Genethon, and the University of Washington is being prepared for Human trials that will likely start in the next year or two. We recently got to meet a dog, appropriately named “Hope”, at the University of Washington. Hope was severely affected by MTM, almost to the point of having to be euthanized. She received the treatment and within weeks she became a happy, playful dog. It brought tears to our eyes to see her scamper around and trot down the hall of the research facility.
Eventually, we hope to make the treatment available to people like our son, John, who have lived with the disorder for years – or decades. But, there is more work to be done, specifically; researchers need to conduct a series of studies regarding how the treatment can safely be delivered to these older patients. We have started a movement we are calling, “Hope Happens”, to help fund the studies that are necessary to bring this treatment to these older patients. So far, we have solicited donations through mailings to friends and family and to many of our friends on Facebook. We are now looking at a different form of fundraising: Tapping into the online gaming community for fundraisers and other events. This looks quite promising.
Hopefully we’ll have more to share soon and remember, Hope Happens!
Gary, Pam & John Scoggin
**Congratulations to the Scoggins! They've raised $11,580 in support of Dr. Childers research efforts.**
How I Met Your Father is the true story of Aminah Hart. Like many in our community, Aminah knows about the devastating loss of a child born with a congenital disease. Despite heartbreaking loss, Aminah was able to rise from the ashes of brokenness to again find unexpected joy and love. Her book is now available for preorder from Book Depository with free shipping worldwide.
About Aminah: Aminah Hart was born in London to a West Indian father and Australian mother. When Aminah was only a baby her mum, Helen, returned to Australia in order to escape poverty. Aminah grew up in Melbourne where she began a career in advertising. By her early thirties Aminah seemed to have it all – a successful career in advertising, an adoring husband, and a baby on the way.Their son, Marlon, died at just three months from MTM. Returning to Melbourne after the end of her marriage Aminah had another baby boy, Louis, who also passed away from MTM. After the death of her second child and another failed relationship, Aminah was devastated. In an interview for a woman's magazine, Aminah says that "being a mother without a child to parent is one of the most difficult things she's ever encountered." In an attempt to console her, and offer some hope, her mother suggested that she try IVF. In the wake of several attempts at IVF, Aminah finally got pregnant and gave birth to a daughter, Leila. Later, Aminah found out the identity of Leila's anonymous donor father, Scott, and arranged to meet him. A heartwarming story of triumph after terrible tragedy, of finding love and happiness in a most unusual way - the extraordinary, back-to-front romance of IVF recipient Aminah Hart and her anonymous sperm donor, Scott Andersen.How I Met Your Father is the extraordinary true story of a woman who overcame terrible losses to find love and happiness in a most unexpected way.
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The Joshua Frase Foundation