Welcome to Zachary's site. Life is a wonderful gift, full of precious memories that should never be forgotten. Now these memories can be shared so that you too can enjoy them forever. Time here on Earth is not guaranteed, and the life of Zachary will be taken away too soon. He is fighting Sandhoff disease and this is his story........
Zachary was born: September 29, 2004
He received Wings: November 8, 2006
Zachary was born on September 29 2004. He was born a month early and the doctors said he was doing very well. Then it came that we did not think he was hearing well. so I asked the docter to do a hearing test. They felt that on his right ear he was hearing fine then on the left ear he was not. We started noticing that he was unable to focus on things with his eyes, so they sent us to the eye docter, whom told us that there was a cherry red spots on his macula. Who would ever thought we would get a diagnosis as bad as Sandhoff disease. We had blood drawn and sent to the Mayo clinic. Soon we received the news that our precious son was positive for Sandhoff. Our world has came to a crashing hault for now. We go to our first appointment at the U of M on June 21st 2005.
Well we are comming up on Zacharys first birthday, and it is more apparant everyday that something is not right with Zachary, and you can see the disease setting in. We go for ear surgery on the 15th of September and October 18th he goes to see a palmanoligist. We just got through a really bad cold, we were able to keep it from getting worse. He is doing really well now not much has changed other then facial movements are getting slower and the startle reflex is getting much worse. He is very jumpy hard to keep in one spot, he wants to go all the time he is learning how to stand. He has his physical tharapist and occupational therpist comming in 2 times a week so he is getting some good support. I am trying to keep you all up to date as much as possible. Please continue to pray for Zachary as we enter our second year with Sandhoff disease.....
Update as of July 2006:
We had an appointment here in Muskegon to get tubes put in his ears, but after finding out about Sandhoff disease they told me that my only chance to get them done is to take him to Devos so i talked to his pediatrician and she made an appointment for him to go to devos. About a month later he had his tubes put in may of 2005 and so far those have been helping him alot. We all were doing pretty well up until February 19th of 2006. Zachary started having great difficulty with breathing he kept turning blue on me. I took him to 3 different hospitals and then finally the third one sent us to Devos Childrens Hospital we were admitted with pneumonia. While we were there they did a swallow study and found that he was asperating. On Febuary 24th of 2006 he had his g-tube put in to prevert further aspiration while eating. We were having some problems with the feeding tube but we were released on Febuary 28 2006. Again we were doing really well until another turn for the worse. We were not able to stay at home the whole month of March we were in and out of the hospital. They did a test and found out he had clamidia pneumonia. They treated him for that and with many ups and downs at the of March we finally came home. We now had Hospice after this hospital stay and we were not for sure if he was going to pull through and regain his health. On April 10th 2006, we went to the Emergency room here in town because of Zach having celulitis on his right elbow. The doctors put him on antibiotics. On the 13th of April we went back to his pediatrician and she was not happy with the progress of the infection. She sent us to Devos to get admitted, and for antibiotics to be given through an iv. They did a bone scan to test for any other infections which all came back negative. The infectious disease doctors came to see Zachary and told us it must have been a drug reaction and finally we came home after being there for a week. We have been home since then once we got all of that under control. No sooner did Zachary start to have sezures that were not able to be controlled at home it seemed. We ended up back at Devos and Dr Umfleet his neuroligist there, put him on Klonipin and Tegretol. We came home but they just got worse again. I called Dr Carlson his regular neuroligist in Ann Arbor and made an appoitment to go there for an eeg. We ended up going back to Devos and were there for a week. Friday came around and it was time to go to Ann Arbor to get the eeg done, they sent us there by ambulance. When he was placed on the eeg machine, within 5 minutes they said he was in status which means constant seizures. Zachary started having alot of problems while we were there. He started to not breath and have more problems, so they sent us over to the ICU where they decided they were going to admit him. They could not seem to get the seizures stopped or under any kind of control. They gave him a dose of phenabarbatol and he stopped breathing. The doctors had to bag him twice. I decided to put a dnr on him because they wanted to give him drugs to put him in a medical coma and put him on the ventilator. I told them no because he would not be able to come back off of such a thing. A week later we got moved to a moderate care floor. I talked to the social workers and they said there is nothing else we can so for him. They thought that he needed to be closer to family, so we were only in moderate care for 1 day. After that I decided to come back to Devos Childrens Hospital. From there they said that he would only be able to go home with hospice. Though they told us that they do not think he will make it a month. But this past weekend was not so easy for Zach, we were not for sure if he would make it through the weekend. But we pulled through. We went to go see his Pedaitrician on July 11 2006. So for now Zachary is at home and hospice comes into the home. All we can do is put it in gods hands and let god do his work. I will keep you all up to date for this point. I pray for hope and may god bless you all.Well he were are getting ready to celebrate zachs second birthday he is doing very well we have not been to the hospital since our visit to ann arbor but we are looking forward to having all his family here to celebrate his 2nd birthday on the 30th of september so that is all that is too update will keep you all up to date on all about zach god bless you all well here it is september 26 we made it home to daddy where he is so happy um doing better but not 100% but will work on getting there thanks for all the prayers he is home and with me and his daddy well here we are oct 14 2006 and zach took on sick yesterday and things were and are looking gloom he got another ambulance ride today we really arnt sure what is wrong yet but him and mommy are at devouse childrens hospitol as of this afternoon i havnt heard anything from mommy to tell me as to what the exact problem is but i'm gonna take a good guesse at he has phnumonia again and is having a pretty rough time right now but he is where he needs to be i really dont beleive he would make it til monday had he not gone to hospitol so i'm now placeing his chances in the doctors and the people praying for him so please pray an extra prayer to hopefully help pull him through this one so maybe we might even get the oppertunity to spend another christmas but as for now i live today with him as to there may not be a tommorow because as we all know we may not so thats all i can add for now i will try and post more when i know more god bless you alll sun sept 15th mom called and they have started him on a 7 day iv antibiotic the call for now is pnamonia in both lungs both lobes and the possibility of it being walking pnamonia so for now its one day at a time hello to all that have stopped by he is still with us we started a new med and we up a one of his sezure meds so we are still in the hosp they lowerd his food to 20 and upped his iv to 15 so he is still on the same fluid just diff way but thank you all for praying and we all need to keep praying thank you for stopping by and i will keep you all up on the news well for all of you knowing zach this is the worst thing i have dreaded this day aall my life zachary has passed on to be with jesus today being november 8th he passed away at 4:50 pm he was living at the hospice house for the last week i hope all of you out there keep praying may god bless you all. Well as you all know we are comming up on zach birthday and he is going to be able to spend this one in heaven with all the agels and they are going to do a very goo party for him he will be greatly missed here on earth for it will be our first birthday with out him but he will never be forgotten in our hearts as this day comes there are so many people out there that remember what a sweet and caring little man he was and like i have always said god gave me a perfect angel well i am goin to try and stay up to date on this web site and hopefully make zach proud of me he would love what everyone has wrote and said about him we all love and thank you all. Well here it is almost two years later and still having a real hard time dealing with the fact of zachary not being here but i do know the good lord is doing a great job with him there are many nights lately i lay down and can not sleep for all i think about in my little pooh he was my life and i know everyone is missing him big brother ask about him all the time but i am sure he is up in heaven having a great time with tabby and his great grandparents but he is greatly missed by many and always thought about with all of this may god bless you all
If I could have a lifetime wish,
A dream that would come true,
I'd pray to God with all my heart,
for yesterday and you.
A thousand words can't bring you back,
I know because I've tried.
And neither will a million tears,
I know because I've cried.
You left behind a broken heart,
And happy memories too.
I never wanted memories,
I only wanted you.
Forgive me for crying
And being in pain
Know that I love you
And you are my Son
And in my heart you'll remain.