GM1 gangliosidosis

Meet the Children....

If you would like your child to be included on this page, please email me at oraleam@yahoo.com

                                         

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 lysosomal storage diseases, 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

 
Cooper earned his angel wings July 8, 2009

Ella Louise Mather
 
Home Country: United Kingdom

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

Click here to view Ella's website 

Princess Ella returned to the angels on the 29th of December 2009

 

 Enya Bajada

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)   

You may email Michael at mailto:%20michael.a.bajada@gov.mt or m.bajada@global.net.mt

 Enya sailed away to heaven August 12, 2009

Krystian Krzyzewski

Home Country: Poland 

Krystian was born on February 27th, 2005 in Brwinow, Poland and went to the angels on March 6th, 2007.

    Marlena Krzyzewska m.krzyzewska@gmail.com

 

 Click here to view Krystian's website

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 was our fourth child, normal pregnancy, and all ultrasounds showed a perfect and healthy little girl.When Lilie was 4 hours old, she went into respiratory failure and was "life-linked" over to the Children's Hospital of Minnesota. After only a 4 day stay in the PICU she was declared healthy and we took her home.She had a routine one month recheck from her PICU stay to make sure that the heart murmur she had was still closed. That was the first time we ever knew that our lives would never be the same.From that time on, until her death, we fought along side the doctors and Lilie to find her a diagnosis and cure. Never in a million years did I EVER think that what was wrong with her, would take her away from me... and there was nothing I could do to stop it. But that was the reality of the disease....There is NO cure. So, after Lilie passed away at home, peacefully, painfree, and surrounded by her brother , sisters, mommy and daddy, grandparents, our favorite nurse who became family to us, and her aunt, uncle and cousins, we decided to donate her brain and heart to a Brain and Tissue Bank with the hopes that her donations will help Scientists get closer to finding a cure for these diseases. 

 Click here to view Lilie's website

 

Matilde Rossetti

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 alesposaro@gmail.com

Matilde flew away to Heaven on September 19,2009

 

                                                                       Samuel Dimond

                Home Country: Australia

Samuel was born on April  14, 2008. He was born 3 weeks early and everything was a-ok. Then, at 4 months of age, he stopped developing and started to go backwards in his milestones. He was dignosed in February 2009 with GM1 Gangliosidoses.

                                                                         Theresa Dimond (Samuel's mommy)

                                      Click Here to view Samuel's website

 Samuel earned his angel wings July 21, 2009

Scarlet Maria Lane

Home Country: New Zealand 

Our beautiful baby Scarlet was born in London in March 2006.  She was our second born – Olivia is three years older. Scarlet was a very happy baby. She had big brown eyes, smiled a lot and gained weight consistently.  At around 3 months, Scarlet developed a persistent cough which generally got worse at night, to the point where she would choke. Doctors told us she had asthma and prescribed an inhaler. We put Scarlet in the Jolly Jumper at around four to five months and noticed that she couldn’t hold her head up or bear weight on her legs. At five and a half months we began feeding Scarlet solids and offered her finger foods which she couldn’t seem to put in her mouth. She was showing no signs of sitting up and still needed her head supported when being held. We left the UK when Scarlet was seven months old, looking forward to holidays in Malaysia and Australia on the way back home to New Zealand. We were trying to practice Scarlet’s ‘sitting up’ when we noticed that her spine didn’t seem straight. This on top of all our other concerns sent us into a panic. We took Scarlet to the emergency department in Perth, Australia where she underwent an intensive series of tests. Four days later she was diagnosed with GM1 Gangliosidosis and we were told she had about a year to live. We arrived back in New Zealand in disbelief but concentrated on making sure she had the best life possible

 

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)

 

 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

 Click here to view William's website