Brodryck Brian Gropp
Home Country: Canada
Our beautiful son Brodryck was born August 22, 2003. He captured our hearts from the first gaze into his incredible blue eyes. As “B” grew we knew that he was behind in reaching his milestones but we never dreamed that at 6 months of age he would be diagnosed with GM1 Gangliosidosis. We did enough research to know that our time with him would be short but we put aside the disease and showered him with love and affection. B loved many things like 50’s music, Finding Nemo, knocking down blocks and long bumpy walks but most of all he loved to be snuggled in close.
Brodryck received his wings on October 16, 2004. He was only 13 months old. The quote we use for him is “What the caterpillar calls the end of the world the master makes the butterfly.” We know he made his transition peacefully and he is now doing all the things we wished he could have done here on earth.
We are so proud and blessed to have been his parents.
Sherri & Craig Gropp (and little sister Honor)
Cooper Reid Wilson
Home Country: USA
Cooper is our precious little boy. He was born 6 weeks early, but he was healthy... 10 little fingers, 10 little toes, piercing blue eyes and the cutest little crooked smile. His development was slow, but we were told that preemies are often delayed and he would catch up. We were encouraged to give him time. When Cooper didn't roll over at 7 months, couldn't sit up and was still having trouble with head control, we were worried. Cooper was diagnosed with hypotonia and we began an intensive therapy program 3 days per week to work on tone and muscle strength. When he didn't improve we were referred to a neurologist and an ophthalmologist to help narrow down or rule out possible diagnosis. The day before Cooper's MRI the ophthalmologist discovered the cherry red spot behind his eyes. We were told that this was not good news and it drastically narrowed down the possibilities to 1 of 3 conditions. All of which were, and none of which had a good prognosis. On May 16th 2008 Cooper was diagnosed with GM1 Gangliosidosis. We were told an overwhelming amount of information and are still learning. Everyday has it's ups and downs...it's a roller-coaster ride at the very least.
Cooper keeps us laughing with his contagious giggles and sweet smiles! He can definitely let us know what he prefers with his coos and facial expressions. He has even learned a few signs! Cooper loves to be outdoors and moving at all times. I think that since he can't move on his own, he moves through us... So, we are constantly swinging, bouncing, rocking, tapping and tickling! He also gets excited about lights and music, but swimming tops the list by far! Michelle Wilson
This is our little princess, Ella Louise Mather. She was born on the 28th of March 2006. She is the much loved daughter of Michelle and Martin. Ella is a fantastic little girl and will melt your heart with her smiles and giggles alone. Everyone who meets her falls in love with her straight away. Ella was recently diagnosed with GM-1 gangliosidosis (infantile form). Our aim is to try and keep Ella as healthy as possible, keep going and continue to encourage here in everything she does. We are going to try and live life to the full, have some fabulous family holidays, fun filled days out and stay 100% positive. We will never give up home and just love her to bits. Michelle Mather
Princess Ella returned to the angels on the 29th of December 2009
Home Country: Malta
Enya was born on June 23,2008. She is the first born to Adrielle and Andre. At 5 months of age she was referred to specialists for further investigations after some of her milestones were not being fully reached. Soon after, she was diagnosed with GM1. In the small Island of Malta, where dear Enya was born, GM1 is as common as 1 in 4000 live births.
Michael Bajada (Enya's Grandfather)
Enya sailed away to heaven August 12, 2009
Home Country: Poland
Krystian was born on February 27th, 2005 in Brwinow, Poland and went to the angels on March 6th, 2007.
Marlena Krzyzewska firstname.lastname@example.org
Note: the website is in Polish but you can go to http://www.poltran.com/to translate.
Lilie Elisabeth Clark
Home Country: USA
October 16, 2006 - September 3, 2008
Lilie Elisabeth Clark was born on Monday October 16, 2006 at 3:48p.m. She
Home Country: Italy
Beautiful Matilde was born on April 15, 2008. I Soon noticed there was something wrong and by the end of January 2009, at 10 months of age, Matilde was diagnosed with GM1 gangliosidosis.
Alessandra Sposaro de Frutos (Matilde's mommy)
You may email Alessandra at email@example.com
Matilde flew away to Heaven on September 19,2009
Home Country: Australia
Theresa Dimond (Samuel's mommy)
Samuel earned his angel wings July 21, 2009
Scarlet Maria Lane
Home Country: New Zealand
Our beautiful baby Scarlet was born in
Scarlet regressed rapidly. She had regular seizures, lost her eyesight, her hearing, the ability to move or eat and eventually her life at the age of 20 months in November 2007. Despite all this, Scarlet was a very happy little girl and she knew her family loved her very much.
We have recently welcomed a little boy, Flynn to our family. We were nervous about the pregnancy being affected with GM1 but a CVS at 11 weeks confirmed Flynn to be a healthy baby.
We all miss Scarlet terribly and she will live on in our hearts forever.
Stephanie (Scarlet's mommy)
Stephanie (Scarlet's mommy)
William Josephe Marquardt
Home Country: USA
Our son, William, came into this world on July 7, 2005. He was welcomed by his mommy, Oralea, daddy, Rod, and big sister, Kyla. We enjoyed a full year of watching William grow from a happy little baby to a babbling toddler who cruised around the house and could walk around the furniture. Soon after his 1st birthday we noticed that William wasn't learning any new skills and there seemed to be something wrong. At 18 months of age, we finally got a diagnosis - GM1. We were heartbroken at the thought of losing our little boy. Since that fateful day, we have learned to cherish the simplest of moments. William has brought so much enjoyment and love to our lives while teaching us courage and strength. All we can do for William is love him and care for him the best we can. Unfortunately, as much as we want to, we cannot change his life’s course. However, by sharing his story, we hope to educate people about these diseases and promote awareness so that research will be done to help find a cure so children will no longer have to suffer . Oralea Marquardt