This memorial website was created in the memory of our son, Conner Watkins who was born in Georgia on March 30, 2000 and passed away on March 13, 2004 at the age of 3 years and 11 1/2 months. Conner had Sandhoff Disease which is a rare genetic disorder. It is a deficiency of the enzyme Hex A and B, and at this time there is no cure. The disease is a rapid one and death usually occurs by age 3. The children go from happy, healthy babies to severly disabled in a matter of months. They lose all muscle tone, and will not even be able to hold up their own heads anymore, after the disease sets in. They develop seizures and other problems associated with the gradual decline in the brain function. Our son, lost his battle - but will never be forgotten.........because he is and always will be our....
Conner was born on March 30th, 2000. He was a healthy baby and we were so thrilled to finally have our first born in our arms. Conner developed normally as a baby and was always smiling and laughing, we had no idea what was to come. At age 9 months we noticed that his legs were always stiff, and that he couldnt get anywhere when he attempted to crawl so we asked the dr about it. He said not to worry, children develop at different paces and he will be fine. The next 3 months, we began to worry even more as everyone commented on how tired he always looked and why he would fall over when he was sitting on the floor. We were about to have our second child, and just prayed that there was nothing indeed wrong. On March 27th, 2001 we became parents for the second time to a beautiful little girl. We took the kids in for Conners 1 year check up and Cailee's 2 week. The doctor then took one look at Conner and told us that he was very concerned about how lethargic he was and why he was not progressing like he should. These were the exact things that we had asked about before and he told us not to worry. He told us that we needed to see a neurologist and do so right away. The next week we were seen by the new dr and he then said that Conner must have cerebral palsy. We said how could this be? He said it must of happened during delivery, but with therapy he should progress in time. We then started therapy - both occupational and physical. He seemed to be doing well for the first few months. He was starting to sit for longer periods of time, and with his new Afo braces for his feet he could stand with our help. He would when prompted too move his feet, like he was trying to walk, and we were pleased with his progress. The therapists were as well. Conner was baby talking and able to say momma, dadda, Hi, uh oh, and babba. They wanted us to start speech therapy to help him more, so we did. At around 15 months we started seeing a new neurologist. This doctor was not comfortable with the diagnosis of CP and wanted to run some more tested on him, just to be sure. We begun a series of tests that we thought would never end. Every one of them coming back fine, and our nerves started an endless roller coaster. Conner was still what we thought doing fine, though he seemed to tire quicker then he had months earlier - we thought he was just working that hard. He was eating good through these months, and was able to eat regular baby stage 3 foods along with eggs, grilled cheese, oatmeal, crackers, cookies, and many other odds and ends. At 17 months the neurologist wanted us to see an eye doctor to check Conners sight. This doctor visit was one we will never forget. We went in and the man briefly looked at Conners eyes and walked out, when quickly returning he asked us who gave us the diagnosis of CP. We told him, but added that our new Dr wasnt sure of it. He told us, no I'm sorry but I know thats not whats wrong. We got very concerned and asked why? He told us that he found cherry red spots in that back of his eyes and that meant that he had one of 5 different storage disease. We had no idea what that meant, and he wouldnt talk to us further about what it did mean. He told us that he would talk to our dr and discuss what to do next. We were in a panic and so worried about what this could mean, so we went home and looked up storage diseases on the computer. Every one of them said fatal, and terminal. This cant be we thought to ourselves. That man had to be wrong, and we were sure of it! So no sooner were we absorbing what we just read that we got a phone call from his dr saying that we needed to have blood taken right away. We asked him if this is infact what could be wrong with our little boy, he told us that we shouldnt jump ahead just yet - how can we not we said, he told us to wait and see what happens with the blood work. Well the next day was September 11th, we were at therapy and had an appointment at the hospital for the dreaded blood work to be done. We went ahead and went anyways to the hospital after therapy even though it seemed dangerous due to what was going on at the twin towers. Things at home after the testing were as normal, because we convinced ourselves that the tests were going to come back normal and we would all be okay. We took a trip to Maryland in November and the day before we were heading home, I called to check the messages at home. There was a message from the dr saying he needed to see us in his office right away. We knew right then and there that the news we were going to get was not going to be good. We got home and went into the office that day, ofcourse our appointment was after hours. We walked in, he sat us down and said I hate to have to tell any parents something like this. I stood up and said please dont give me a line of how sorry you are, just please tell me what is wrong with him. He said " Well Conner has Sandhoff disease and its normally fatal by age 3" I could not believe what I just heard! My son was terminally ill, and was 18 months old and was going to die by age 3. I said please tell me theres something you can do for him. He said NO there is nothing, we dont have a cure for any of the diseases like this. We walked out of that office in complete shock. Our son was dying, our baby girl was 6 months old and our lives were now changed forever. Conner stayed healthy and happy, even though he was diagnosed with this terrible illness. At age 2, Conner started having seizures. They were the stop breathing type. It was terrible and meds were started along with at home pulse ox monitoring. After the seizures started we really noticed a decline in him. Slowly our baby was slipping away from us and there was nothing we could do. We did as many things as a family that we could during this year because we knew that time was not of the essence. From age 2 to 3 was so hard. Our child went form laughing and smiling all the time, to just laying around and staring off into the heavens. He was always tired and stopped responding to us. He started having trouble eating towards the end of the year and we started using thick it to make it easier for him to swallow. We continued therapy and raised the dosages of that natural meds we had been giving him. We didnt know how much time we had left with our sweet boy as his third birthday quickly was approaching.
Please see the timeline page for weekly updates that were written in his last year of life.
Your candle is lit for your memory to live on, you may have left our arms... but you will never leave our hearts.
my deepest condolences / Michelle Gonzalez (passerby)
Ur beautiful angel was sent here on a special and brief mission...But u got the priviledge to be his parentsto luv himto hold himto make his stay special.Hold on to those beautiful memoriesto that beautiful smileto those beautiful eyes.....He will wa...
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The Lord has a purpose for everything.... / Peter Ross (old friend of his moms )
He does even if we are unable to understand it. I have experienced loss; we never had the opportunity to spend time with our children who left us; but as with Conner we know they are waiting in Heaven for us and we will see them all one day. I can't ...
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I'm so sorry... / Elena Piexoto (old school friend of his mom's )
I was just devastated reading this story. As a mom myself, I cannot imagine that pain you went through in seeing your baby die at such a young age.
I hope you remember all the fond memories of Conner. It was a blessing that he wa...
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Christmas 2009 I have not updated in a very long time. Its not that I have not wanted to but time has gotten in the way. Here we are on Christmas Eve and we are getting ready for the holiday around the house. The girls are so excited and can barely wait for Santa to come tomorrow. The presents are wrapped the tree is trimmed and the house has beautiful holiday decor. There is always something missing though at this time of year - its Conner. He would be 9 years old and I am sure an active young boy. His spirit is always around us I feel he has never really left all the way. Yet as we approach in March 6 years since he left our arms its almost sometimes hard to really remember him being here and not having the feeling of missing him. At this time of year it is always bittersweet. We are so blessed with 2 healthy little girls but we always remember the son we did once have. Merry Christmas to everyone and have a blessed New Year.
Here are 2 new pictures of the girls.
March 2009
I meant to update on the 13th as that day marked 5 years since our baby boy lost his battle with Sandhoff disease, but time got away from me.
5 years wow is all I can say. I still remember the day just as if it was last week. This time of year is always so hard on our family. Conners angel date, sister Cailee's birthday followed by Conners birthday 3 days after his sister's. Even the smell in the air reminds me of that day. We are all doing well. We have 2 beautiful little girls that light our days with sunshine and for that we are always thankful.
We thank you for those of you that still write and still remember our little boy. He is today and always will be our special angel.
Here are 2 recent pictures of our girls. They are growing fast !!
We are Thankful
Happy Thanksgiving to everyone !
This year my list to be thankful for is so long.
I am thankful for my older daughter Cailee. She is such an amazing little girl. Her soul is so pure, she is always thoughtful and caring. I would not have made it through any of our journey with Conner without her. I love her more then words could ever describe. A very special friend to our family Riley Luce earned her angel wings not long ago, Cailee has often thought about her brother and Riley meeting in Heaven - I am so thankful she can look beyond whats on Earth and look into the Heavens and eternity there.
I am thankful for my little daughter Cayden. She is simply such an amazing gft to have been given to our family. Everyday when I look into her eyes she reminds me so much of her brother. I really feel some of his spirit lives inside her. Cayden means spirit of battle and with her spirit I will always battle to move forward in my life. Remember all those that have entered heaven before us, and do my best always. I love you baby girl, you are always my little princess!
I am thankful for my husband. We have now been together almost 17 years! Wow where does time go? At the end of the day no matter what our struggles might have been, I always know he is here and that he loves me. We have had our ups and downs and in betweens but we always make it. Conner was our first child, and his determination through his battle will always be what has glued our family together.
I am thankful ofcourse for Conner. I know he is always right there only a breath away. He is my only son, and there is not a moment in time that I dont love and miss him. His life had so much meaning, and I will always hold his memory close to my heart as I live my life - until we meet again he will always be my inspiration.
I am thankful for my family and friends. All of which complete me.
Happy Thanksgiving 2008
Happy Halloween Well today is Halloween and also Conner's Daddy's Birthday....... So we are wishing all those angels in Heaven and all those here on Earth a very Happy Halloween - be safe and have FUN !!
Another disappointment in the genetics world
Another disappointment in the genetics world
Sorry I have not updated in a very long time, things here have been more then busy!
Cailee is in the 1st grade now, and really enjoys her new teacher. She is doing well in school, and has taken a real enjoyment for math! I am proud of her everyday for the person she is and the way she looks at those that maybe others would ignore. Cailee has a true sense of liking those that others may make fun of or not to play with, this makes me proud of her in so many ways. Her teacher tells me that she is helpful to everyone, and overall the kindest child she has seen in a long time!
Cayden on the other hand is now 19 months. A full ball of energy and I am afraid approaching the terrible 2's a little too quick! I remember this age all too well with Cailee - and oh the fun we will be having UGH !! Cayden throws her food off the kitchen table, she throws herself onto the floor when not getting wants she wants, and every other word out of her mouth right now is NO or NO WAY! Hmmm where do they learn these beautiful words from!! Cayden has all her teeth in, and is attached to her blanket for naps and nightime. She is a beautiful and aggravating little princess that I love so very much!
The main reason for my update today is to alert anyone reading this that may possibly be anywhere in the North Florida, Southern Georgia areas. This is regarding a genetic appointment for Cailee's carrier testing that was supposed to be done yesterday at Nemours Children's Clinic in Jacksonville Florida. Our genetic Doctor that we saw for Cayden Dr PAMELA ARN / who was amazing and wonderful to us and our family was out of the office - instead we saw DR LAURA MARTIN who was sadly the most terrible professional physician I think I have ran into during my history of genetic diseases. Our appointment was scheduled for 11:00am of which we did not get into the room until 12:30 / the reasoning behind the delay was in fact thanks to MS MARTIN - she explained as we entered the room that the delay was because she was not comfortable about seeing Cailee because in her opinion there was no reasoning behind her being tested for something that she doesn't think matters!!!!!!!!!! We were already speechless at that comment, as she began to examine Cailee, which was completely not necessary because Cailee is a healthy 7 year old child obviously not affected by Sandhoff disease. Again the reason we were there was to finally get the carrier testing done for Cailee that we have waited on for a very long time. She then decided to lecture us for over 45 minutes about her personal opinions on why we should not have Cailee tested. She told us and I quote here "I have seen many studies done on family's and their children - these studies have shown that there are many negative results of getting siblings tested for genetic disorders because of the negative impact it has on their lives and the fact that the parents treat the children very poorly after finding these kind of things out!!!" My husband and I were floored by these comments, as she went on to state that "there is no reasoning behind having Cailee tested now or later in her life" UUMMMMM excuse me here?? Isn't this the whole reason that I gave birth to Conner and he had a genetic disease is because I simply did not know I carried this gene???? MS MARTIN said that this is something that should be Cailee's decision to have done later in her life - and be a choice her and her husband make together, not something that her parents decide for her!!!!!!!!! I told her (now by the way I was VERY mad) that Cailee is very aware of what being a carrier means, and that she is knowledgeable on what Sandhoff disease is and what it does to children - in fact I reminder her that she did watch her brother die from this disease with no cure. She said again I'm quoting here " Cailee is 7 - she has no understanding of what her brother had or died of, she has no understanding of what Sandhoff disease is nor what it does to anyone, she is 7 and in her 7 year old mind she cannot possibly be prepared to know if she is a carrier of a very rare disease" By now both my husband I were beyond angry, as Ms Martin brought out the genetic diagram of Cailee's chances on being a carrier, (come on now she is going to teach me about Sandhoff Disease???) She told us that it is ultimately her choice as to whether or not we proceed in getting Cailee tested, and for her right now - she was choosing to say NO !!!!!!!!! I gathered my things, Cayden whom was asleep and told Cailee to get dressed right now. I told her that this is the exact reason that I push so hard with everything I have inside of me to educate the medical communities on genetic disorders - how to treat patients, and the importance of carrier screenings. I told her that I was very disappointed in her medical behavior and that I would have Cailee tested with or without her approval. I have always been told that Dr.s are not supposed to be giving their personal opinions in anything regarding medical care, only the medical facts should ever be stated.
It is in my opinion that this Dr LAURA MARTIN denied Cailee of preventive medical care, and that she expressed way too many of her personal and invalid feelings regarding carrier testing, spoke about all of these things in front of my daughter - which could of in fact given her some kind of complex about whether or not she is a carrier of this disease. I feel that it is absolutely necessary for my daughter and our family to know Cailee's carrier status for her future, and Cailee is fully aware of the importance of this as well. If anyone at all out there would like to help me in filing complaints - or has legal advise, please email me at gmwatkins74@yahoo.com // I plan on taking this issue as far as I can until I know that this will not be done again to any other family. We cannot let things like this continue to family's, children or anyone trying to prevent further children from having to suffer from a genetic disease such as Sandhoff Disease.
Here is the Dr's full information:
Dr. Laura Martin Genetic Specialist
807 Children's Way Nemours Childrens Clinic Jacksonville, FL 32207
Corporate Headquarters
Mail 4600 Touchton Road East Building 200, Suite 500 Jacksonville, FL 32246
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