Nemaline Myopathy Support Group


In memory of...

Philip Bonvino - USA

08.02.88 - 15.11.15

Philip Bonvino of Lindenhurst passed away on Sunday, Nov. 15 at the age of 27.

Born on Feb. 8, 1988, Philip lived with Nemaline Myopathy, a rare neuromuscular disease.

Philip’s mother, Joy Librizzi, dedicated her life to taking care of her son.

Philip   Philip   Philip

Drew Christine Potenti - USA

13.07.07 - 16.10.13

Natasha(Tosh) Edgell - England

27.11.73 - 14.10.13

Claudia Lucena - Spain

14.02.13 - 12.06.13

Claudia   Claudia   Claudia

Ares Dröge - Germany

25.10.12- 20.03.13

Ares   Ares
Ares with his mother and father.
Ares   Ares

Victor Fong Jun Yang - Penang, Malaysia

07.08.04 - 24.11.12

Victor   Victor

Alba Montalvo - Leon, Spain

2000 - 24.6.12

Alba   Alba

Dakota Williams

See Dakota's stage review!

Dakota   Dakota   Dakota
    Heather, Wayne, Dakota, Debbie, Ronald, Dylan and Destiny   Dakota just graduated with his Assistance dog Tolan, August 2009

Skyler Sauls North Carolina

... - 2011


Michelle Rogers - Savannah, New York

1967 - 22.November.2010

With Molly at Niagara Falls, 2006

Maria Gonzalez - Spain

20.May.2004 - 24.May.2010

Maria   Maria
María, yesterday the phone rang and a pain came over me. A voice told me that you had already left, tired of your wheelchair, equipment and nurses. You and me know; let's keep the secret. You have decided to start a new journey without any bandages. I understand you. I know you are leaving a deep emptiness that will never be filled by anybody because you are irreplaceable. Mum and Dad have sung your lullaby tonight; they have sung to you since you were in your mummy's belly and all these six years. I know you will feel happy when you hear it again in heaven. I have seen that your Teddy Bear is going with you. He will give you strength and will help you not to feel so lonely, for sure. Enjoy your journey: go as far as you wish. This time there will be no obstacles.   Only 4 days ago was your 6th birthday and you got lots of presents. Don't worry about them. Mum and Dad will keep them safely for you until we three meet again. Yesterday, while you were sleeping siesta as usual, God gave you wings to fly freely; you became an angel. I deeply hope that your departure makes you happy and free. Maria, going back home without you will be very hard, but Mum and Dad know that you will always be with them. You have been a very courageous and strong girl and you have taught us a lesson of maturity and fortitude that we will never forget. An angel has left, but you, María, you will always be with us.

Lots of kisses. Be happy, be free. Inmaculada Ceacerro.

Nancy Ferrell - USA

1968 - 2009

July 2008

Melaina Grace Cunningham - Missouri, USA

December 5, 2005 - March 19, 2009

Melaina - 3 years old
  Melaina   Melaina
    Andrea, Jeff and Melaina    
Mélaina   Read Melaina's Caring Bridge website.   Melaina

Olivia Rae Judd - Ontario, Canada

July 9, 2008 - Oct. 14, 2008

Steve & Cindy Judd with young Evan and Olivia Rae
  Olivia   Olivia
Olivia   Olivia

Tony Pagnani - Michigan, USA

1941 - 2008


Graciela Beatriz Anguiano - USA

June 13, 1961 - March 5, 2008

Graciela worked as a school teacher.

Shana Burghina - Romania

04.March, 2002 - 11.January, 2007

Shana   Shana
Shana in the Green Forrest - April 2005   Shana - Christmas 2006

Emily Jade Treuer - Sydney, Australia

30th September, 2004 – 6th March, 2005

Emily   Emily

Nerea - Spain

d: 2005

Nerea   Nerea   Nerea

Michael Petrie-Repar - Queensland, Australia

24th Nov. 2000 - 8th Oct. 2004

With dad, Paul
    With mum, Barbara
Michael's first birthday party 24 November 2001

Andre` Flatby - Norway

Andre   Andre   Andre
Andre       Andre
Andre` with little brother Tommy

Johan Terblans - South Africa

20 August 1987 - 19 September 1995


Megan Terblans - South Africa

21 Feb 1985 - 26 June 1985


Noa Rivkin - Israel

29 June 2002 - 18 September 2002

Noa   Noa   Noa

Jarrett Ray Miller - Arizona, USA

Passed away: 3 March 2004

Jarrett   Jarrett
Jeremy and Sandra with their "Lil Cowboy"

The 3rd day of March, 2004 our son, Jarrett Ray, died at the Tucson Medical Center in Arizona. He was such a wonderful, loving, and beautiful child. We will forever miss him so very much. Jarrett, in his own angelic way, brought Sandra and I together "closer" than we have ever been before. We believe that it was his purpose, his destiny to be here only months in order to fulfill what God had planned for him. He touched so many lives in such a short time. He was always a "happy child" that loved his two turtles, his siberian tiger, and his Winnie the Pooh toys. He was into railroad stuff like trains, and engines and was also into sports on tv. He loved Nascar, Dale Jarrett #88 UPS, and the Texas Longhorns. He would sit on my lap and watch the games being played on tv with much earnest. He was truly perfect, even with the trache, g-button, and all the machines.

Anna (Roksolana) Pavden - California, USA

Passed away: 30 November 2003

Read Anna's poetry page

Ian Cuthbert Robinson - California, USA

October 19, 1998 - March 10, 2002

Ian   Ian
Ian   Ian

Holly Roberts - Ontario, Canada


Zachary Stephenson - Tennessee, USA

1992 - Dec. 5th 2000


Brooke Harrington - Massachusettes, USA

(d: June 17, 1996)

Brooke   Brooke

Daniel Paul Jacobson - Saskatchewan, Canada

May 18 - Aug 31, 1980

Elijiah Lee Jacobson - Saskatchewan, Canada

July 1 1995 - May 4, 1996
Daniel   Elijah

Theo Shisler (right) - London, England

12th April - 13th Nov 1999


Jonathan Semczuk - New York, USA

23 May, 1997 - 26 July, 2003

Nicholas Semczuk - New York, USA

25 Dec, 2000 - 11 June, 2002
Jonathan   Nicholas

Plant a tree for NMSG


Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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