ZACHARY, 
YOU ARE MISSED AND LOVED SOO MUCH
June 1st 2001- January 20th 2005

Merry Christmas Zachary. Christmas just isnt the same without you sweetie.. Hope Santa is good to you this year!!


Dear Zachary ~

After all the pain
after all the suffering
it’s finally over Zac.

Even though we can’t see your
long eye lashes and beautiful
brown eyes. No more out of no
where smiles. We are glad the
suffering is over Zachary.

No more trips to Motts Children’s
Hospital. No more feeding tubes surgeries.
No more making Daddy the bad guy for
sticking tubes down your little throat. We are all
Glad its over and you’re in a happier place.
A place called heaven.

We always remember and honor Zac.
We finally funded a Medical Grant in your name,
to help children who are suffering just like you did.

We learned so much from you Zac. Never
take the simple things in life for granted. Live
each second as its your last, you know when its just gone.

Daddy, Mommy, Michael and I miss you more than you
will ever know. Tow years later, we are all still suffering
your lose but we know in our hearts that you are in a better place.

We never knew what it would be life to hold an angel,
Until January 20, 2005, we finally realized what its like.
Zachary you will always be our angel!

You will always be our Brave Little Soldier!

Until we meet again Zachary!
Love your sissy,
Michelle 

 



This memorial website was created with love in memory of my little brother, Zachary Gibson who born in West Virginia on June 1st 2001 and sadly passed away on January 20th 2005, leaving behind his father Mike, his mother Camille, his sister Michelle and brother Michael. Zachary had a rare genetic disorder called Sandhoff disease. I am sure a lot of people have no idea what Sandhoff disease is. Sandhoff disease is much less common than Tay-Sachs Disease but is so similar to Tay-Sachs in the way it affects children that most cases cannot be distinguished without biochemical laboratory tests. As in Tay-Sachs Disease, motor weakness begins in the first 6 months of life and is progressive. The same exaggerated startle reaction to sound, early blindness, progressive mental and motor deterioration, doll-like face, cherry-red spot and enlargement of the heart are all present in Sandhoff Disease The same loss of swallowing function occurs progressively together with increased risk for aspiration and subsequent chest and lung infections. Death usually occurs due to the latter problems at about 3 years of age. Some involvement of the bones and abdominal organs may occur which is distinct from the child with Tay-Sachs. Sandhoff Disease is also inherited as an autosomal recessive disorder but, unlike Tay-Sachs, occurs more commonly in the non-Jewish population. In fact, given the higher incidence of Sandhoff in non-Jews and the clinical similarity of the two diseases, it is probable that some of the non-Jewish children diagnosed before the availability of the laboratory tests actually had Sandhoff Disease. Sandhoff Disease is also inherited as an autosomal recessive disorder. But, unlike Tay-Sachs occurs more commonly in the non-Jewish population. The fatty material (GM2 ganlioside) which accumulates in the child's brain cells is the same in Sandhoff and Tay-Sachs diseases. However, the enzyme deficiency in Sandhoff Disease arises from mutations in a different gene on a different chromosome (i.e. the b-subunit gene on chromosome 5 instead of the a-subunit gene on chromosome 13 for Tay-Sachs). Mutations in this beta subunit gene affect both Hex-A and Hex-B activity. As a result, children with Sandhoff Disease have almost no hexosaminidase unlike children with Tay-Sachs who still have Hex-B activity but not Hex-A. Because of the nearly total absence of hexosaminidase activity in affected individuals, laboratory diagnosis of an affected child as well as prenatal diagnosis is accurate and reliable. However, biochemical testing for the adult carrier requires special care and careful standardization of the laboratory test. DNA-based tests are also available for families in which the specific beta-subunit mutations have been identified; when these are known, the DNA-based tests provide the highest level of specificity and accuracy for both carrier testing in relatives and for prenatal diagnosis. NTSAD has current information available on where to obtain the tests that are critical to the diagnosis and management of Sandhoff Disease within families.

If tears could build A stairway, and memories, A lane, I'd walk right up to heaven and bring you home again

Zachary's Story
Zachary was diagnosed with Sandhoff disease approximately September of 2002 afer hospitalization at the University of Michigan Health System for seizures.
Zachary was born at 37 weeks in Charleston, West Virginia. His birth weight was 5 pounds 15 ounces and was 21 inches in length. Mike and Camille noticed something was different about Zac from the beginning. As an infant he would have hard stools and would bleed with bowel movements, despite the fact that he was exclusively breast fed. In addition, they state they noticed that his big toe turned up and seemed different on both feet. At 7 months of age he was referred to a neurologist. At his neurologist evaluation at 9 months of age he was found to have developmental delay, failure to thrive, and hypotonia. Zachary began having seizures in Augest of 2002 at the age of 14 months. He was hospitalized for 4 weeks at the University of Michigan Health system, and it was during that time that the diagnosis of Sandhoff disease was reportedly made. He was discharged home after hat but returned again to the hospital because of poor seizure control. His other hospitalization was reportedly in February of 2003 because of aspiration pneumonia. His father also noted problems with his G-J tube at that time. Zachary is no longer able to swallow. His original G-J tube was placed during his first hospitalization. Since then he has had several surgical revisions of his tube, approximately every 4 months. he parents state that there is currently consideration for performing another surgery with fundoplication. Zachary currently getting Robinul, 1cc, 3 to 4 times a day to decrease his oral secretions. For seizure control he is was getting Phenobarbital, 17 c per day. and Topmamax, 50mg twice a day. His immunizations are not completely up to date. He did not get the second and third dose of hepatitis B vaccine, but he parents have no intention on pursue these. His only known allergy is to Zantac. Zachary has low vision but his parents do not feel that he has completely blind. They say that he watched the shadows of a ceiling fan and he will fix on the mobile that he had at one point on his crib. Zachary's hearing was intact, he heard and responded in his own way when people were talking to him. Zachary would only have a bowel movement 3 to 4 times a week and when he did, he would cry because of all the pain he was in at the time. Zachary had consistent seizures and was startled easily.
Zachary developed almost normally prior to his diagnosis. At the age of 1 he was babbling and smiling. He would use a walker. He could sit without support. However, over the year after his skills had significantly declined. Zachary was then unable to do anything independently. He then became dependent on his parents for 24 hour care. He had POOR head control. He didn’t smile and didn’t have any speech sounds. Zac's parents could distinguish his facial expressions.

As this material accumulates, a child begins to show progressive brain degeneration. Motor weakness can begin as early as the first 6 months of life and is progressive. Many children with Sandhoff disease also have an exaggerated startle reaction to sound, vision loss, progressive mental and motor deterioration, a cerry-red macula, and macrocephaly (large head). Children with this condition eventualy lose thier ability to swallow and are at an increased risk for aspiration, subseuent chest and lung infections. Death usually occurs by 4 years of age due to these respiratory probelms..




Friends Links:
www.djsfoundation.org
http://conner-watkins.memory-of.com
http://www.geocities.com/gmwatkins74/Cailee.html  (connor's little sister)
http://www.mulliganangels.com/index.html
www.geocities.com/zacharygibson05/home.html  (Thank you soo much Gina)

Please view my friends also that have Sandhoff's Thanks to Melissa Mulligan, I can show off my other angel friends, that I am in in heaven playing with...
http://www.mulliganangels.com/SandhoffDisease.html

National Tay- Sachs& Allied Dieeases
http://www.ntsad.org




I love you soo much Zachary... I wish you were here to live so much more fun experinces with us.. Zachary, I thank you soo much for all the inspirating to attend school... You have made my life change soo much for good. I love you honey.. You are my angel.. Please guide me over as I attend school... Make sure I make all the right choices.. Love you big sister, Michelle








Since our child died, we have changed. We dont put off things we can do together as a family. We may never have another chance. Knowing love and adjusting to loss has made us more loving and caring parents.
 - Mom & Dad