{"id":441,"date":"2022-06-17T15:04:49","date_gmt":"2022-06-17T15:04:49","guid":{"rendered":"https:\/\/sapphireafricafoundation.org\/?p=441"},"modified":"2024-08-26T11:06:17","modified_gmt":"2024-08-26T11:06:17","slug":"dont-waste-your-pain-a-moving-story-by-tim-gillen","status":"publish","type":"post","link":"https:\/\/sapphireafricafoundation.org\/?p=441","title":{"rendered":"Don’t Waste Your Pain: A Moving Story By Tim Gillen"},"content":{"rendered":"\t\t
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A tale of an American philanthropist and how he is turning life around after being hit by a tragedy of unimaginable proportions<\/strong><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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My name is Paul Collins, I\u2019m founder and director of Sapphire Africa Foundation, I write the story of my brother and friend Tim Gillen with a heavy heart after losing my friend and brother, Tim Gillen. Tim visited us here in Uganda, in 2019 but before that we had communicated almost everyday for a year, he helped us so much to establish Sapphire Africa Foundation when he was here, we had a lovely time helping people. He was pivotal in the rise of the Sapphire Africa Foundation. Before he passed on, we talked deeply and one day i asked him hard questions about his life and family, which are all in this article, this was a conversation of almost an hour but i have tried to make it fit in this one article. Let me not waste your time\u2014enjoy the story of my friend donor and lover of humanity.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Paul Collins with Tim Gillen during his Ugandan Trip<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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Tim Gillen, born and raised a New Yorker, a lover of sports and humanity, went through life as any American would\u2014little different but all the same, recovering from addictions, fighting enemies from within, a life tinted by so many ups and downs. In fact, Tim was lucky to have survived a few accidents along his life path. His life was tinted by so many happenings, but to me, the most compelling was a life with God and Duchenne Muscular Dystrophy.<\/p>

Tim met his wife, Lynne, in the fall of 1990, and by February 1992, they married, starting a family and their next missionary assignment. Then their sons came along: Everett and Austin. In 1997, at about the age of 3, Lynne, Everett\u2019s mother, realized something uncommon with his activity. She noticed that Everett was not jumping on the couch like the neighbour\u2019s child, who was about the same age. They were both about 3 years old, and this was in 1997. He had to hold on to keep from falling. Lynne recognized this and other possible symptoms of the disease that had claimed her brother Perry in 1982 when he was 15. It was Duchenne muscular dystrophy.<\/p>

Duchenne Muscular Dystrophy (DMD) is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy. DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases, it can affect girls. It can lead to inactivity, eventually disability, and death. In the early 1980s, Lynne was told she was not a carrier of Duchenne, but this was before the Duchenne gene was discovered in 1986. If she had been tested after the gene was discovered, she would have been told that she was a carrier. Now, the disease had crossed to another generation to hunt for Everett and Austin\u2014Lynne and Tim\u2019s own very fruit of marriage.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t

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Tim Gillen During the hike for Duchenne in Uganda<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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As any loving parent, Tim Gillen was shocked that the disease had emerged and now had to face the tough reality of taking care of two beautiful boys grappling with a rare disease. \u201cI would say that my initial reaction was shock and fear\u2014shock that this happened to my children, fear of the unknown, dread of what was to come. The boys\u2019 mother, Lynne, tried to fill me in on what to expect, but at the time, I had no idea of the reality of how difficult and far-reaching the difficulty would become. I was very dismissive of Lynne\u2019s initial concerns and her experience with the disease,\u201d Tim said.<\/p>

With many reactions and disagreements between the two parents about what was going on, Tim and Lynne divorced. \u201cMy poor reactions definitely caused a severe disconnect between the two of us, and she eventually divorced me in 2002,\u201d Tim added.<\/p>

\u201cThe boys kept losing abilities, and from a parent\u2019s perspective, it was very difficult to watch and still try to be encouraging to them. The big thing they lost the ability to do was walking around age 10 and being able to raise their hands off their lap around age 14,\u201d Tim narrated. He recalled one event that stuck in his memory: \u201cI remember being woken up by Everett\u2019s doorbell that he held in his hand while sleeping at about 3:30 AM one night. All he wanted was for me to help him scratch his eyebrow!\u201d<\/p>

With time, Everett and Austin needed help getting out of bed around age 10. At around age 11, picking them up under the shoulders was very painful, so we shifted to using a Hoyer lift to get them up off the ground where they were playing, onto the toilet for bowel movements, or out of bed and into their wheelchairs. From the parents\u2019 observation, picking them up under their shoulders caused their shoulders to crush into their spine and lungs because of weak muscles. \u201cLifting them up by myself was quicker and easier, but I switched to the Hoyer lift for their comfort\u2019s sake.\u201d<\/p>

With Duchenne, you don\u2019t live so long\u2014the life expectancy is always 15 to 20 years. \u201cMy boys were diagnosed in 1997. Austin died at age 16 in 2012, and Everett died at age 22 in 2017.\u201d That wrapped up Tim\u2019s days with the boys\u2014it could only take time.<\/p>

Now, Tim, no longer with the boys, embarked on a journey to recovery. See, something with death\u2014we humans never get used to it, even when we expect it. And that was the way with Tim: the pain, the misery, the memories\u2014all he had to endure and heal at once. Every day was healing, no matter how painful it seemed.<\/p>

\u201cThe principles learned in recovery from addictions have been very instrumental in my peace and well-being. One of the principles is: in order to keep my recovery, I \u2018have to give it away,\u2019\u201d Tim told me. So Tim didn\u2019t use his pain to break down\u2014he used his pain to further his life and lift those of others. He birthed The Everett and Austin Project to take care of other Duchenne patients and to extend a hand of charity to the less privileged. To me, as he narrated, it was about defeating death and paying back for the loss. \u201cI have decided to be grateful for what I have learned from being Everett and Austin\u2019s father. I learned a lot about being a better father. I feel like I have a lot to give to help others going through this dreadful disease\u2014both to suffering children as well as helping parents that are in the shoes that I was in,\u201d Tim said.<\/p>

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Tim Gillen with Paul Kayonga, one of the Duchenne parents in Wakiso District in Uganda<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t
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\u201cI created The Everett and Austin Project to be a source of care for children and parents going through Duchenne Muscular Dystrophy in poor countries\u2014to be like the MDA and the State of Minnesota for those who aren\u2019t so fortunate to receive help from such American institutions,\u201d Tim Gillen says.<\/p>

Tim Gillen travelled to Africa for the first time in 2019 in October and i celebrated my birthday with him, we visited many Duchenne Muscular Patients and many families suffering from this dreaded disease, trying to show them that they are important and valuable, break down stereotypes, stigmas, and ostracism of children and parents of children born with this genetic defect, and also to create a far-reaching mechanism for reaching all of the children and families in the world suffering from this disease. The effect of this is to give care, love, and supplies to all who are in need.<\/span><\/p>

Tim Gillen died in January 2022 when he was hiking to fundraise for his causes in Africa. \u00a0The New York State Police said that they recovered the body of Timothy Gillen, 55, of Peekskill from the bottom of Shelving Rock Falls in Fort Ann. Police were called to the area after a group of hikers said they saw a body at the bottom of a cliff. Police believed Gillen was hiking when he fell to his death. They do not believe there was anything suspicious about his death. The incident remains under investigation.<\/p>

Tim Gillens\u2019s Death left so many families and local African organisations in despair the that he is the one who was funding many of these organisations including Sapphire Africa Foundation which he loved the most, it was a struggle of recovery that would come in years\u00a0\u00a0<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"

A tale of an American philanthropist and how he is turning life around after being hit by a tragedy of unimaginable proportionsMy name is Paul Collins, I\u2019m founder and director of Sapphire Africa Foundation, I write the story of my brother and friend Tim Gillen with a heavy heart after losing my friend and brother, […]<\/p>\n","protected":false},"author":1,"featured_media":442,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"footnotes":""},"categories":[2,3,4,5],"tags":[6,19,18],"class_list":["post-441","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-children","category-education","category-medicine","category-water-delivery","tag-africa","tag-sapphire-foundation","tag-tim-gillen"],"_links":{"self":[{"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=\/wp\/v2\/posts\/441","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=441"}],"version-history":[{"count":29,"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=\/wp\/v2\/posts\/441\/revisions"}],"predecessor-version":[{"id":3581,"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=\/wp\/v2\/posts\/441\/revisions\/3581"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=\/wp\/v2\/media\/442"}],"wp:attachment":[{"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=441"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=441"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sapphireafricafoundation.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=441"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}