We wanted to raise your awareness about a specific genetic syndrome that affects 1 in 380,000 babies born worldwide. The syndrome, which was characterized in 1964 by Dr. Michael Lesch and Dr. Bill Nyhan, as a rare genetic disorder which was caused by the deficiency of the enzyme hypoxanthine-guanine phosphribosyltransferase (HGPRT), created by mutations in the enzyme-specific gene on the X chromosome.
When this enzymatic deficiancy occurs, uric acid is found to build up in all body systems. Severe gout and kidney problems can occur. Also found are poor muscle control and mild mental retardation. Because of the pain involved, self-mutilating behaviors can occur (lip and finger biting, scratching at eyes). There is neurological involvement as well, including involuntary, repetative movements of the arms and legs. Most of these children cannot walk and require restraint in a wheelchair. Life expectancy in this population of almost all boys, is only one to two decades.
We were not aware of this disorder until meeting up with an old friend from school and finding out first-hand…
Domenic James Ganter of Gilbert, AZ passed away at home, at the age of 11. Domenic was born March 24, 2000 in Mesa, AZ to George Russell Ganter and Jennifer Joy McGowan Ganter. He has a beautiful smile to compliment an even more beautiful soul. We all will see you one day on the field of dreams, playing ball!! Domenic is survived by his parents, George and Jennifer Ganter of Gilbert, AZ; sisters, Haylee Ganter and Josephine Ganter of Gilbert, AZ . A Memorial Service will be held at 4:00 PM,Friday, January 6, 2012, at Falconer Funeral Home, 251 W. Juniper Ave.,Gilbert, AZ 85233. Arrangements under the direction of Falconer Funeral Home, www.falconerfuneralhome.com
God saw you getting tired and a cure was not to be. So He put His arms around you and whispered “come to me.” With tearful eyes we watched you, and saw you pass away. Although we loved you dearly,we could not make you stay. A golden heart stopped beating, hard working hands at rest. God broke our hearts to prove to us, He only takes the best.
You will be missed, Domenic.
Three years ago Greg got a friend invite from George, someone he went to Junior High and High School with. They once again became fast friends, since then we have gotten very close to their family, as though they are our extended family that we had not seen in some time. I immediately took to Jennifer (JJ), his wife, and their three beautiful children. We too became fast friends, even though we had not known each other before this. Recently George and JJ asked us if we would be Joey’s Godparents, we were incredibly honored and we accepted gracefully.
In 2010 they invited us to come on their vacation with them to Cape May, New Jersey, we could only stay one night due to health reasons, but it gave Greg and I time to get out of the house for a night and for Greg to see his friend he had not seen in over 30 years. We had so much fun, we played and had wonderful conversations with their children, Haylee, Domenic (Dom), and Josephine (Joey).
I fed Dom his lunch and JJ told me to be careful that he might bite me because he doesn’t know me, I told her not to worry, Dom won’t bite me. Dom laughed because he knew that he wouldn’t bite me. He may bite someone else, but not me, silly! JJ was surprised at how Dom took to Greg and I, like he had known us for so long.
Greg and Dom watched sports on the tube and cheered for the teams and gave each other a very soft high five. We felt like we were all long lost friends that just got reacquainted. You could tell that this family had so much love to share, we were amazed at how much they do for each other on a daily basis, all day long. It was amazing to see this family run, with such love and care, we saw them giving so much of themselves for each other, such a beautiful thing to see and something you don’t see very often. We honestly have never seen a family like theirs, they give so much to each other!
Haylee, their oldest daughter, who is now a teenager, helps with everything around the house, she gave so much of herself to Dom, and continues giving so much of herself to Joey and her parents. She took on the responsibility of being a helper and a caretaker. It has been difficult for her because, as we all know, a teenager wants to be a teenager and doesn’t want to be told what to do. However, Haylee being very smart, set her boundaries with her parents because she wanted to simply be a normal teenager, but still wanted to help. What a beautiful young lady she is and has become.
Josephine (Joey), their youngest daughter, who is now in her terrible two’s, Jennifer (JJ), their mom, has her hands full. Joey is a sweet little girl who only knows love, if you can imagine all of the love you could ever muster up, well that is this child. She is this way because she has such a wonderful family that takes care of her every needs until she can do it herself. They teach her gracefully as Joey only emulates these traits towards anyone and everyone that looks in her beautiful blue eyes.
Domenic, being their middle child and only son, brought so much love to this family, so much compassion, understanding, patience, and he gave this family a lot of love and even joined in on cheering for their favorite sports teams, a perk of having a son. He was fun to be around and gave the Ganter family a lot of laughs and joy. He loved baseball and especially loved the Arizona Diamondbacks, but loved baseball so much that his parents got him into a little league for handicapped children, Dom had finally had his dream come true, he was playing baseball! The first time he played, he hit a homerun, what an exciting moment! It certainly was a very proud moment for George and JJ, his beaming parents.
JJ is the most loving mother, the most caring and understanding, and most compassionate, she has been through a lot and has also been the rock for this family, along with her wonderful husband, George, he works hard to provide for his family, he gives so much to them and teaches them the true meaning of a family. Together they are amazing, they love each other, they give to each other and show their family what love truly is. This is one family that we have seen in our lifetime, to be rare. This is what family is about, they don’t do anything alone, they work together as a team, and help each other when they are down. They are a true family unit and we admire them so very much. We hope that someday, if we ever have a family, that we will be as half as wonderful as the Ganter family.
Last year Dom participated in a clinical study with Dr. Nyhan and his colleagues. The study was an early phase study, and George and JJ knew that it was something that they were doing for other children, as well as trying to figure out a solution to this disease. They flew out to California and once the trial started they had immediate results and it had seemed as though Dom’s pain had lessened and that he did not have the urge to bite his lips, therefore the whole time he was without his mouth guard. That alone, was amazing results. It is our belief that once this study is in the latter phases of the study, that this will help so many children that have Lesch-Nyhan Disease, it will ease their pain and suffering.
George and Jennifer have decided to use Domenic’s ashes in their tattoos as well as spreading his ashes in the Atlantic Ocean in Cape May, New Jersey, where they had a wonderful vacation with family and friends. They are also spreading his ashes into the Pacific Ocean as well as in all of the baseball parks that they have been to and to those that they never got to go to. They are spreading his ashes into this world, so that all of us can feel a piece of him, for he was the sweetest boy we knew.
We also wanted to mention that everyone at the funeral wore their favorite sports team jersey’s as a tribute to Domenic, because he would have wanted it that way. See you in the stars Domenic!
George and Jennifer are donating Domenic’s brain to science, here is that information from Jennifer directly:
To all my LNS moms and families. Please if any of you do not know of the Lesch-Nyhan Research foundation in Lake shore IL give Elaine Timbers a call. She is an amazing woman who can help you and our boys. She is the woman who paid to have Doms Brain taken tohe is an amazing doctor who is working very hard to help our boys. The number for the foundation is 847-234-3154. I just do not want any other moms dads or sisters to have to go through so much when there is people who care and are willing to help 🙂
They have also donated his eyes to help someone else be able to see. This family has given life back to this universe, and some very lucky people will benefit from this very blessed child, who has given so much to his family and now has given back to the world to help all of you.
If you would like to find out more about Lesch-Nyhan Syndrome, or if you know someone with this disease, please visit the links below:
LNS Informational Resources:
Medline Plus: http://www.nlm.nih.gov/medlineplus/ency/article/001655.htm
LNS Patient Support:
Family Village: http://www.familyvillage.wisc.edu/lib_lnd.htm
Lesch-Nyhan Disease International International Study Group: http://www.lesch-nyhan.org/
National Organization for Rare Disorders: http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/255/viewAbstract
In Memory of Domenic J. Ganter, the Ganter Family would like donations sent to:
The Lesch-Nyhan Syndrome Children’s Research Foundation
210 South Green Bay Road
Lake Forest, IL 60045
Make out your donations to:
Miracle League of Arizona or your local Miracle League Association.
11130 E Cholla Street
Scottsdale , AZ 85259
© 2012 – 2013, Ready For The Shift. ™ Wendy & Greg Zangari, All rights reserved. Permission is granted to copy and redistribute these articles on the condition that the content remains complete and in tact, full credit is given to the author(s), and that it is distributed freely.