Angels Among Us
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angels among us REMEMBERING OUR SPECIAL CHILDREN | 2012 We have all experienced loss throughout our lives, yet there is no greater loss than that of a child. Each of us reacts to this loss in a distinct way and we each have a different way of expressing our thoughts and feelings. Over the years we have heard from many parents, grandparents, brothers and sisters whose loved ones have succumbed to an MPS or related disease. We’ve heard about the impact these special individuals have had on the lives of those around us, and how blessed we are to have had them in our lives. This publication is a tribute to those who will forever reside in our hearts. Paul Raimund Adams | have seen that Steffany MPS II wonderful Barnett | MPS III A 11/17/85–10/13/09 smile of yours 6/29/95–2/26/11 with those “A dream is a wish your heart “Steff, thank you for dimples, and makes.” so many wonderful heard your memories! You have — Karin and Stuart Adams (parents) heartwarming blessed our lives “Paul was about love, courage, laugh. We immensely.” miss you so family, art, a dog and smiles—all — Steve and Valerie (parents), and are memories of joy and tears for very much. Stevie (brother) Barnett a special grandson.” Not a day goes by that we don’t think of you. Brianna Michele Bays | — Mary Starr Adams (grandmother) You are always in our hearts and in MPS III A Robert E. Alvarado | our thoughts. You have left such a 5/24/95–12/6/07 MPS III B hole in our lives, one that will never “Because of you I love flowers, 4/2/88–6/17/07 be filled. We were so lucky to have watch for butterflies and everything you in our lives for 27 years. We — Carolyn and Thomas Porzel purple, and sing Barney songs wish it could have been longer. But all the time. I know all the words (parents) the wonderful memories we have thanks to you, and I sing ‘Happy Kristofer Arnold | MPS VI will keep us until we see you again Birthday’ to the moon. Because of 12/6/81–7/19/09 someday. When I get to hug you you I am aware of angels around again someday, I don’t think I’ll us. I miss you so much. Carter and — Monica Leone (friend) ever let you go. It was our honor to Makenzie talk about their sissy all “We can’t believe it will be three be your Mom and Bonus Dad. We the time; they miss you so much, years this year since you have love you always, Kris.” we talk about you often. Brianna, left us. Sometimes it seems like — Sherrie and Tony Roman you are such a special girl and you yesterday you were here, and other (mom and bonus dad) will never be forgotten. I love you, Dolly. I hope you are dancing, days it seems like forever that we singing and eating lots of ice cream.” — Karen Black (grandmother) Mark J. Bernbaum | MPS I Matthew Caldwell | MPS II videos and shared stories. Words 2/14/92–5/8/02 3/3/94–3/11/11 cannot describe how much we miss him. — Joel and LeeAnn (parents) and — Robert and Marjorie Austin David (brother) Bernbaum (grandparents) Matthew, you are in our thoughts day and night.” | “Our Matthew was a very special Christopher W. Brogdon — Mark and Stephanie Caldwell 2 MPS III A boy. Matthew never spoke, but he (parents) 6/1/79–4/7/02 did not have to. As a rambunctious Joseph Donald Casey | ML II “We miss your laughter and your and energetic child, he clearly 4/21/01–2/9/03 smile. We know you are well now, communicated to us. We knew laughing, running and playing. when he was happy, hungry or “My name is Anna Until we meet again, keep your sad. He learned sign language, Casey. I am 8 years dad company. We love you both eventually expanding his vocabulary old. My brother, very much.” to more than a hundred words. Joseph, died before When he was younger Matthew I was born. He died — Darlene (mother) and Jess (sister) would run and play nonstop. He with Mucolipidosis. Brogdon angels among us loved to hit baseballs off a tee, play I have one other catch, hockey and ride in his toy Edie Burke | MPS I brother and one 7/27/98–5/2/08 cars or tricycle. sister; my sister’s name is Ashley, As his activity my other brother’s name is Adam. “It’s hard to believe my sister died slowed, he Sometimes I cry when we watch almost four years ago when I was shifted his Joseph’s videos. It’s sad if you lose a 6. Edie was my big sister until I was favorite activity family member. I never got to meet four, and then I became her big- to watching Joseph. I loved him and still do. He little sister. The name was chosen movies. He was the best brother in the world! because I helped out with her like would laugh His first word was “Bob.” I miss him she was my baby sister and I was his deep so much. I know he’s in heaven taller than her. I remember Edie’s belly laugh at his with God.” big smile favorite scenes. Two of his all-time — Anna Casey (sister) I woke up favorite characters were Kramer to every and Newman from Seinfeld. Karlee Rae Classen | MPS I morning. Our Matthew was a gentile, friendly 7/14/94–5/2/00 It would and compassionate boy. He would always — Kent and Karlene Classen (parents) help console fellow students who make my were sad at his daycare school when Camden family he was young. He would befriend Jeremy laugh everyone he met, and enjoyed Crockett | and smile taking his teachers by the hand for MPS II back. When people were around walks. Whether it was a policeman, 10/30/05–10/30/05 her, she could make anyone laugh. fireman or mailman, Matthew was Matthew Edie loved to make raspberry always thrilled to meet people in William sounds, and hearing her would uniform. He made his presence Crockett | make everyone want to join in. known, whether at school or at MPS II Doing it along with her made the playground. He sure could 9/18/03–3/10/07 her make more noises and happy take control of a room. Although squeals with her mouth. Probably — Billi and Jeremy we had many years to prepare for the best part of Edie was her Crockett (parents) March 11, it was impossible to expressions. When someone would prepare for losing Matthew. The Kelley laugh, she would smile and laugh. days, weeks and months since he Crompton | ML III When someone would cry, she left us have been very difficult. 7/4/63–3/17/09 would look concerned. And when Without Matthew’s presence, someone smiled, she’d do her big, “Three years have passed since the house is a quieter place. We beautiful smile back. I appreciate we said goodbye to our precious know that Matthew is at peace. We when people ask me about my sister, daughter, Kelley. It was an event remember him through pictures, because Edie is important to me.” we had expected to happen — Liza Burke (sister) continued >> >> numerous times previously, when Irish heritage and the name of brown eyes and chubby cheeks her breathing problems brought Kelley. There are so many ways in of a familiar face. Love is in the about many close calls. After years our daily lives when Kelley’s spirit warmth radiating off his captivating of doing everything we could to is with us while we are missing smile. It is in his tender touch and keep her alive and her physical presence. Yet, we are passionate embrace. Love is in his as comfortable relieved that she no longer suffers. acceptance of every piece of God’s as possible while The book I wrote about her first 39 creation. It is in the way he greets 3 MPS III ravaged years, Kelley’s Journey: Facing a Rare everyone as if they’ve been friends angels among us her body, we were Disease with Courage, was published for years. Love is in the way he can suddenly without in 2003. When I started to update make the world seem so perfect her! Our hearts the book after her death, I realized even as the sky is falling down were broken. how many more stories needed to upon me. It is in the way he knows Kelley developed be told. So I am now working on exactly what to say when words are a very deep faith in God, a new book. Diagnosis: Rare Disease needed, but revels in the silence with a determination to make the will contain the stories of a dozen when words are unnecessary. Love best of the life He had given her. families dealing with ML II and is in the sparkle in his eyes when he We often marveled at her positive ML III. When it is published, most looks at me and says, ‘I love you.’ attitude. Even during those final of my proceeds will go toward It is in the way he slays the dragon years, when she needed care on a research. Although Kelley was a to save his princess; his sister. Love 24/7 basis, she accepted the pain, blessing to us despite her disease, is in the way he surgeries and setbacks.