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 —  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 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. She often we hope for a cure so others might runs around the said that she knew her lungs would be spared.” house dressed be what would “do her in,” because — Denise Crompton (mother) in all sorts of after each bout with pneumonia costumes, just breathing became more difficult. Zachary Durcholz | MPS III B because he Many years of trachea problems 1/16/87–5/21/98 can be anyone led to the development of a fistula he wants to — Chris and Annette Durcholz between her trachea and her (parents) be. Love is in esophagus, causing food and drink the courageous to reach her lungs by going across Petey Feibelman | MPS II way he faces life with no fears, no the fistula from her esophagus to 1/20/61–6/28/76 worries. It is in the way he lives her trachea. A few periods of using — Phyllis Feibelman (mother) on even when he is gone. It is in a feeding tube bought her some the way he made an everlasting time, but each was temporary. On Katie Foshay | MPS I impression on so many without the last day of February in 2009, 6/13/76–6/29/84 knowing it. Love isn’t just in she said it was time for her to go anyone or anything. Love is in — Maria and Steven Foshay (parents) back into the hospital to have my brother, my friend, my hero. another feeding tube placed, as Alexandria Fox | MPS I Love is in Danny. When reminded she was aspirating food once again. 10/1/90–12/28/99 of the millions of young girls As Kelley was packing her hospital gazing into their futures with — Colleen Farrell (mother) bag, she said, “I guess I’ll never get hopeful expectations of a fairytale to use that new suitcase I got for Danny Gniazdowski | MPS II life, I simply smile. Why? I have Christmas.” That was the first time 9/10/97–8/16/05 already lived my fairytale life. I she ever made a remark that led have found my one true love, my “Every girl dreams of finding her me to believe that she seemed to knight in shining armor, my prince one true love, her knight in shining know she was at the end of the line. charming. But most importantly, I armor, her prince charming. She I took a deep breath and put my have found my friend, my brother, spends countless hours fantasizing arm around her, realizing she was my hero, my angel, and he is Danny.” of the love she hopes to one day telling me that she knew how weak encounter. We often find ourselves — Sarah Gniazdowski (sister) her lungs were, and that she might defying odds and taking chances in not survive another operation. | MPS II the pursuit of love and happiness. Brett M. Golsteyn She did survive for a while, but the 3/28/97–1/14/07 But what really is love? For me, following weeks were very difficult, love is not simply just a word used — Mark and Darlene Hesprich as her lungs continued to fail. She universally to describe a naïve (grandparents) died on St. Patrick’s Day, which infatuation. Love is in the big was very fitting for one with some Cameron Jarrett Green | Jeffrey Allen We know you are with us in your MPS II Grimes | own little way; you make us smile 6/4/97–11/25/11 MPS III A when we are down. We could never thank you enough for what you “Cameron gained his angel wings 11/26/86–10/6/04 gave us and taught us. Our love is on Thanksgiving Day at home in “We love you— eternal and we miss you more than my arms. This day will forever be our very special 4 we can express. When we join you with me. It was the hardest day of angel!” in heaven you can say, ‘It’s a party,’ my life. But, as I think back on that — Helen Grimes and we cannot wait for that day.” day, now, I can try and put it in a (grandmother) more positive perspective or so I try — Colin and Paulina (parents), and and tell myself daily. My little man “Superman” Andrew Jump | Alex (brother) Jump fought like the bravest of lions. MPS III B Kaylee Rae Kacer | MPS III A What I have to tell myself is that he 10/9/97–5/19/09 3/24/88–3/28/02 was just tired. Before Cameron was Thinking of You with Love even conceived I know that he and — Russell Kacer (brother) God had a plan. I know they both We thought of you with love today, | MPS IV angels among us Amanda Keith understood exactly what was going but that is nothing new. 5/21/77–12/6/04 to happen and when. I have started We thought about you yesterday, to understand this more over the and days before that too. — Andrew and Louise Zygmuntowicz past year. The good We think of you in silence, (uncle and aunt) Lord gave me one we often speak your name. | MPS II of his most precious All we have are memories, Kraig Klenke 12/3/91–10/26/10 creations to take care and your picture in a frame. of for a while and to Your memory is our keepsake, “I love you, learn from every day of with which we will never part. You love me, our journey together. God has you in His keeping, We’re a happy family. I can honestly say with we have you in our hearts. With a great big hug my head held high A million times we’ve wanted you. and a kiss from me to you, and my body filled with pride that A million times we’ve cried. Won’t you say you love me too. If love could only have saved you, my son accomplished everything We love you and miss you so much you never would have died. he was supposed to in his short Kraiggy!” 13 years. I miss my ‘Cameronator’ It broke our hearts to lose you. — Brian and Kris (parents) and more than words can express. I But you didn’t go alone. Chelsey (sister) Klenke think of his perfect little curled For a part of us went with you… hands, his gorgeous green eyes, his the day God called you home. “One year ago as stylish spiked hair and his face with — Author Unknown you held Barney, the most beautiful smile forever You looked as engraved in my heart and my mind. “It’s almost been three years now though you slept. I close my eyes and I can feel him that you gained your wings, but you We know that Jesus right next to me. Oh how I miss his are still with us. The sound of your held you, smell and even his head-butts and voice, the beauty of your smile, and But for us left here, kicks. If I had to sum up Cameron the ultimate we wept. in just one sentence it would be joy of your Your red head this: His belly laugh was contagious presence are upon your pillow, and he will forever be the strongest, embedded We will miss you every day. most courageous person I know. within our God knew that your body was tired, I am the luckiest mom on Earth minds and So He brought you home to play. because I AM Cameron Jarrett hearts. We As time goes on, Green’s mom. We love you our wonder what We will learn to heal. sweet little man.” you are doing But a place in our hearts for you every day, We will always feel. — Robb and Monica (parents) and how happy We love you Kraiggy!” Melissa (sister) Green you are and if our family members — Steve and Dee Dee (uncle and aunt), in heaven are fighting over you. and Jake and Ben (cousins) Clayton Because we know when we get to heaven we will never let you go. continued >> >> “It was a few months beyond a Christine A. Majure | MPS I Hope Millington | MPS VI year ago when you fell asleep on 10/8/70–4/18/81 10/17/93–1/4/08 Earth, awakening to your new life. James D. Majure | MPS I “How is it that four years have It has been a difficult adjustment 10/17/72–1/21/84 passed since I got to see your smile, for those of us still here—missing feel your touch, look into your you and redefining ourselves in — Mary Couture (mother) eyes, hold you close? It seems like your absence. There is not a day 5 Glen Malina | MPS II just yesterday! They say time heals

that passes that your life is not an angels among us 3/20/62–4/13/87 all wounds, but I think only the influence on me, or a moment edges have healed. We sure do where you are far from my — George and Barbara Malina miss you, Hopey! You taught us to thoughts. You taught me to place (parents) love fiercely, value in a word, a laugh, a smile. Kyle Joe Manning | MPS I forgive You taught me to find joy in the 7/7/85–6/19/97 freely, laugh little things, like clean sheets, a bike continually, ride, or watching a movie for the — Don and Carol Manning (parents) look for 200th time. You continue to teach Ryan Taylor Mask | MPS III A the best in me about life’s brevity and how 8/10/90–1/12/08 people, and important it is to love everyone. find joy in It is not often when someone’s life “I see you every day in your brother, every day. continues to impact the lives of Jeremy. I know you are very proud I am so others, even after death, but you of your little-big brother. blessed that have done that for me. I am so God entrusted you thankful for you, for your gifts, in our care. I wish we could still and for your life.” have you here, but I’m so glad — Leslie Phillips (friend) we were able to have you for Audrey Kathryn Lawson | 14 years! You were and still are such a blessing in our lives. We think of MPS III A you every day. We always have and 6/7/90–4/7/06 always will love you. Don’t forget to — Robert and Katie Lawson (parents) ‘Save a Place for Me!’” He’s sunshine to my day as you Christopher Lesta | MPS II were here on Earth. I’m thankful — Ken and DeLana (parents), and 8/26/02–12/9/07 I had you as long as I did, and I Heather (sister) Millington know MPS families are as thankful “Since love Jeffrey Joe Mills | MPS I for Jeremy. Keep shining on grows within 9/27/85–12/26/97 you, so Jeremy. Until we hug again…” “My life WAS blessed, beauty grows. — Dorothy Mask (mother) IS blessed and WILL For love is continue to be blessed the beauty Dylan Michael McClurg | because God chose to of the soul.” MPS I give me a son named — Saint 6/16/95–2/21/98 Jeffrey…always in my Augustine — Mike and Ramona McClurg heart!” — Kendra and Lesta (parents) (parents) — Kitty Yelland (mother) Oliver Lieu | MPS II Molly McGinnis | MPS III B | MPS II 10/27/88–6/22/04 12/2/89–9/28/03 Evan Morgan Reed 12/24/94–1/15/06 — Hai and Kathryn Lieu (parents) — Kenny and Kathy McGinnis (parents) The Impact of One Life Alyssa Louden | MPS I When a stone is dropped into a | ML II 3/13/07–10/8/08 Joseph Muonio lake, it quickly disappears from 8/29/84–4/16/89 — Lee Louden (father) sight, but its impact leaves behind Zachariah Muonio | ML II a series of ripples that broaden 1/11/94–2/10/99 and reach across the water. In the — Michael and Anita Muonio (parents) same way, the impact of one life

continued >> >> lived for Christ will leave behind an His courage was inspiring, and You loved clapping for yourself. influence for good that will reach his happiness was contagious. He Happy birthdays, jumping and the lives of many others. was loved by everyone, made us all too many things to list were all — written by Roy Lessin better people, and infected us with worth clapping for. You taught his smile and warm embrace. The us how great all these things are. “Evan has left ripples on our lives, love he shared with all of us can I only wish we wouldn’t forget 6 our hearts, our family and our still be felt today, and will always these lessons so often, thinking community. We would never choose be here in all of us. We could not the business of life is actually to have not had Evan. He taught be more proud to have Richard as what matters. How you loved to us unconditional love, how to have our brother. He was the happiest, have your Duplo people in your faith, how to laugh, and how to love toughest, bravest and kindest mouth, among everything else, and appreciate each other through person we’ve ever met. Thank you, putting them in and out of the tough times. We know we will be Richard, for teaching us these life barn so many times we had to fix together with him in heaven. We lessons, and thank you to all our the doors worn out from so much know he is happy, pain free, and friends and family for surrounding play. Making farm animal sounds that he will be the first one to greet him with so much love. Let’s was so much fun. Bath time was us when God calls us home. Evan, celebrate his life, and pass on the another favorite. angels among us you are our little buddy…forever gifts he shared with us to everyone You were all boy loved…and forever missed on this we know.” and so very busy. Earth.” — Veronica and Michael Vacca You could always — Randy and Jean Ann (parents), and (sister and brother-in-law) sit for a good Caleb and Mattison (siblings) Reed book though, the Cara Sanford | MPS III A classics (nursery Jill Renee Rennaker | 8/18/93–12/27/10 rhymes) being MPS III A some of your — Anthony and Donna Cataldi 3/3/66–12/10/07 favorites. So many (grandparents) — Bonnie and Ralph Rennaker funny memories, (parents) Nathan Scotting | MPS III A you were our little 11/20/88–5/30/03 clown. You taught Diana S. Rodrigues | MPS III A us to keep it simple, another lesson 5/5/90–8/4/09 — Diane Scotting (mother) I forget many times. — Isabella Rodrigues (mother) Garrett Wayne Shelton | Fast forward to all the doctors’ Richard T. Rotelli | MPS III A MPS II appointments, maybe a diagnosis 10/6/85–5/2/11 12/29/89–7/24/11 and a new baby brother. Chances were in our favor that Zachary “Having Richard as a brother was — Wayne and Glenda Shelton (parents) would escape the dreaded fate, but the greatest gift imaginable. The Alex Sobie | MPS II this was not to be. How happy you lessons he taught our family shaped 11/25/90–4/17/01 were to meet your new brother, but who we are today. ‘Don’t Worry, just a little jealous, too. He did get Be Happy’ was one of his favorite — Kim and Bill Swartz (parents) some claps, along with kisses. We songs, and it truly represents the Clinton Szemanski | MPS III A had to watch you didn’t love him to way he lived and the example he 1/18/85–3/3/89 death. The transplant you received set for the rest of us. We are all Zachary Szemanski | MPS III A from dad was a roller coaster ride. so blessed to have experienced 11/26/87–9/9/04 The ups so much higher, when Richard’s love, and while we are sad hope shined brightly. The downs to say goodbye, we believe Richard “Clinton, lower, too. I will never forget the would want us not to worry, not How I wish I could turn back the day we left the hospital without you; to be sad, but to be happy and hands of time, knowing you would in the elevator I noticed the world celebrate his life. Richard was be with us for only four short years. had not changed at all. I carried the happiest kid you’ve ever met. If I had known, how differently your favorite Bert doll, my arms so He loved life, and ate it up. He I would have spent our time empty. When we emerged into the enjoyed just about everything. He together. I also didn’t know how sunshine it became more apparent was dealt a tough hand, but played many times my heart would be torn that the world didn’t know what a it as well as he possibly could, and and utterly broken. It does heal, loss we suffered. always with a smile on his face. but the scar left is deep. continued >> >> So brief, so intense, so life-changing kind of bond that never went away again. If there is a swing in heaven, you were to your family and those and was theirs alone. Sam could she is certainly on it. you touched. I believe in the ripple get Hannah to laugh when no else We miss her dearly and are effect you had in the world, still could. He was her protector and he comforted by knowing with faith we influencing people. Words are so never missed a chance to help her will see her again. She will be able inadequate to express your time when he could. She was blessed to to talk to us again, sing to us again, here. We miss you. have many caring doctors, teachers, 7 and hold our hands. We will see her

aides, family, friends and others angels among us P.S. I didn’t forget you, Zach, next surrounded by angels and she can who cared for her and brought year will be your year. I also didn’t be the one who leads each of us to comfort and learning to her. forget Jacob and Ali, sibs that I will our heavenly Father’s throne and Hannah was loved by all who knew write about in the following years.” introduce us in person. Then our her. We have received many notes tears will turn to joy and sorrows to — Tracy Szemanski (mother) and thoughts of Hannah from pure happiness. Hannah is and will those who knew her well and those “To our angels up above, be always in our hearts and in our who had been touched by her life. We always think of you with love. thoughts. ” All speak about her love for life and Our days with you were a treasure, for people. — Rob and Anita (parents) and The lessons you taught were too Sam (brother) Taulton many to measure. Hannah’s journey with us was short No matter that the years go by, but full of life. Through her many Kevin Michael Witt | MPS II We still miss you, that’s no lie. trials and suffering she remained 8/22/85–11/8/06 The tears still flow, our hearts the one who would smile and bring “You’re always in my heart.” still ache, a smile to others. Hannah touched Nothing can ever your place take. many lives with her happiness — Lynn Witt (mother) Our time with you was oh so brief, and her pleasant personality. She Memories of your smiles bring showed us how to love, persevere, some relief. show courage, and be joyous no We’ll never regret that you were here, matter what circumstances or You touched so many, you were challenges we face. Unable to so dear. communicate, she, nonetheless, And now we all still hope and pray, taught us all about faith, hope and That a cure surely will be found love. We hope someday.” that all who — Gail Finney (grandmother) knew her will take that part Hannah Joy Taulton | MPS III A of her into their 10/21/96–1/21/12 own hearts to “Hannah Joy Taulton passed from nourish and this life into eternity on Jan. 21, hold it there. 2012, at her home resting in her Hannah would bed. She was with family when find that to be a great legacy. she slipped quietly into her loving Now, free from suffering, pain heavenly Father’s hands. It was as and the confines of a body that if she heard her name being called overtime held her more captive, and knew it was time to bid farewell she once again runs freely in a to this earthly home. She lived her place more wonderful than we can life with all the grace and love she imagine. Now she is with friends could muster. and relatives who were waiting Hannah was loved by all her family to welcome her at the gates of and friends. When her younger heaven. She has met and is with her brother was born it was hard to heavenly Father who sent angels get her away from him. She loved to watch over her during her life him and wanted to hold him and on this earth. She is surrounded by be with him. They shared a special the music she loved and is singing NON-PROFIT ORG. National MPS Society U.S. POSTAGE PO Box 14686 PAID Durham, NC 27709-4686 CHAPEL HILL, NC PERMIT #74