Here is a copy of the newsletter that was sent out today by Mito Action about Mito Quilts of Hope. You can also download a copy of the article by clicking here.
Piecing together awareness Mito Quilts of Hope Project spreads warmth one stitch at a time Christine Knox started the Mito Quilts of Hope Project to raise awareness about mitochondrial disease and provide comfort for Mito patients. But a letter she received from a Mito mom requesting a quilt for her son made her realize the project would mean so much more. Tyler was just diagnosed with Mito in September, his mom wrote. It took a lot of tests and a biopsy before his family got an answer. “It has been very hard for him to understand that his body has so much trouble and not knowing why or what it is. He finally has the answers that he needed,” his mom said in the request. Tyler has seizures, problems swallowing, leg pain, weakness, dysautonomia. He is partially g-tube fed. He has had bladder and bowel surgeries. His biggest challenge is to use his energy but not crash. “Having a Mito quilt will be a way he can say, ‘Hey, THIS is what I have. THIS is what I am going to fight.’ … All while comforting him and keeping him warm,” his mom wrote. “Tyler will show his Mito quilt proudly as he is ready to tell the world about Mito. He will use his quilt to help him. Thank you for doing this for our son … and for all the Mito Warriors.” The letter made Christine cry. That is exactly what she wants the quilts to do. “The Mito patients will have a tangible thing to show people that they have an illness, and give them physical warmth,” she said, as well as emotional warmth that someone handmade a Mito quilt just for them. The beginning Christine, 52, who isn’t officially diagnosed yet with Mito but started to finally get some answers in late 2012, had a long lunch recently with Janice Dodds, the first Mito patient with whom she’s had a face-to-face talk. “We chatted about the lack of awareness. I told Janice I wanted to take on a project to create awareness.” Christine, who quilted for about 10 years in her 20s and 30s until her full-time floral design business took up most of her time, realized that she wasn’t the only Mito patient who was cold all the time. “What if Mito patients had a quilt of their own that also raised awareness?” she said. “Out of my own illness and the stressful ongoing diagnostic process for mitochondrial disease, the project was conceived,” Christine said. “I have been shocked to discover how little is known about mitochondrial disease. It occurred to me that I could do something that I love and help bring awareness to Mito.”
Thus the Mito Quilts of Hope Project was born. After several sleepless nights planning, the whole project came together. That was in late August. Already, she has a Facebook page, a Twitter account, a website, requests for quilts, and several quilters working on projects. Christine, who lives in Victoria, BC, Canada, contacted MitoAction and MitoCanada for support and both organizations jumped on board. She talked to her quilting club members, the Pointless Sisters, who thought the idea was fabulous and offered to help. She addressed the Victoria Quilt Guild in Canada and got responses right away from quilters. The quilts With the help of her daughter Vicky, Christine came up with the design elements quilters can incorporate in their creations. For the lettering, Christine chose a font that was similar to what MitoCanada and MitoAction use. She also suggests that quilters use either the MitoCanada or MitoAction logo, the green ribbon, words such as “hope,” “Mito,” and “energy,” and green fabric. “I want to give quilters as much freedom to be as creative as possible,” Christine said. Quilters can choose to make one of three sizes (for more quilting information, go to: mitoquiltsofhope.org). • Crib quilt: 30” x 48” • Lap quilt: 48” x 60” • Quillow (a quilt that folds into a pillow): 48” x 60” For quilters interested in registering to make and donate quilts for this project, go to: mitoquiltsofhope.org, click on “Create a Quilt,” and then “Register to Make a Quilt.” To request to receive a quilt or to nominate a Mito patient for one, visit mitoquiltsofhope.org and click “Receive a Quilt.” Christine expects a high demand for quilts and warns that recipients should be patient. The quilts will generally be distributed on a first-come, first-served basis. Christine’s health journey Christine became severely ill about three years ago but had been dealing with health issues for most of her life. Her illness presents itself with ongoing fatigue, muscle weakness and pain, neuropathy, atrial fibrillation and tachycardia, migraines, stroke or stroke-like episodes, tremors, brain lesions, abdominal pain, Inflammatory Bowel Syndrome, breathing difficulties and low body temperature. She has elevated lab results and others that are too low. Her muscle biopsy has shown that she has a unique variant mtDNA mutation, which is a probable diagnosis of Mito. Hers is a maternally inherited mutation. Nothing is known about this mutation as it has never been seen before, which is what makes her diagnosis difficult. Through her illness, Christine got back into quilting as a creative outlet. “I can pick it up and put it down easily,” she said. “I have to break it up. I can sew for an hour, then I have to get up and walk around.” Because of her muscle fatigue and cramps, Christine is no longer able to work on bigger quilts. Crib, art quilts, and piecing work are her focus now. But it was more than the actual art of quilting that Christine sought. A friend of hers explained how the local quilt guild works; they offer regular sessions for people to quilt together and interact. Because of her illness, “I was feeling isolated. I went from being a social person to not socializing much at all. Quilting answered the need for social outlets and activities with others.”
Getting the word out Right now her main push is getting more quilters registered to make quilts. She’ll soon be contacting quilt guilds in Canada and the United States, quilting magazines, and “The Quilt Show” in hopes of reaching many more quilters. “My vision is to tell quilters about Mito and inspire them to make and donate quilts to adults and children throughout Canada and the US with Mito and raise awareness in the process.” The Mito Quilts of Hope Project Facebook page and Twitter account regularly post information about mitochondrial disease and tips for quilters. Filmmaker Brian Barnard of A Promise Kept Productions is planning a documentary called “Every Stitch Counts” about mitochondrial disease and how it led Christine to begin the Mito Quilts of Hope Project. For a preview of the documentary, go to http://youtu.be/lEJt-OhMs5s.If you’re not a quilter, but would like to help with this project, you can raise awareness about Mito, spread the word about the quilt project, donate to MitoAction or MitoCanada to help Mito families, or donate on Indiegogo to support the production of “Every Stitch Counts.” It is Christine’s goal to raise so much awareness that in the future, Mito patients won’t have to explain Mito … people will just know what it is. And she’s doing that, one stitch at a time. The links: Mito Quilts of Hope website: mitoquiltsofhope.org Mito Quilts of Hope Facebook page: facebook.com/quilthope Mito Quilts of Hope Twitter account: @Quilts_of_Hope Mito Quilts of Hope on MitoAction: mitoaction.org/quilts-hope Mito Quilts of Hope on MitoCanada: mitocanada.org/quilts-of-hope-project/ To donate to Brian’s “Every Stitch Counts” project: http://www.indiegogo.com/projects/every-stitch-countsFor more information: firstname.lastname@example.orgMitochondrial disease is an inherited chronic illness that causes debilitating physical, developmental, and mental disabilities. You can be born with it or it can develop later in life. It’s progressive and there is no cure. About 1 in 2,000 people has Mito. Symptoms include poor growth, loss of muscle coordination, muscle weakness and pain, seizures, vision and/or hearing loss, gastrointestinal issues, learning disabilities, and heart, liver, or kidney failure. Mito is also related to autism, diabetes, Alzheimer’s, and Parkinson’s. MitoAction, a Boston-based 501(c)(3) charity, helps families navigate the difficult Mito journey through its comprehensive website, free teleconferences and support groups, individualized advocacy for school services, camp programs, awareness events, and so much more. For more information, check out www.mitoaction.org.