Memorial website in the memory of your loved one

                 
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....

        


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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. 
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Your candle is lit for your memory to live on, 
you may have left our arms... but
you will never leave our hearts.









Click here to see Conner Watkins's
Family Tree
Tributes and Condolences
Conner  / Bridget Kaskeski (none)
There is absolutely no words in which I can express to you the thoughts and feelings I experienced when I read your story. I just had to reach out and say. My love and prayers are with you all. May the journey through life become a bit more bearable ...  Continue >>
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...  Continue >>
Sorry for your loss   / Lenny
Sorry for your loss
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 ...  Continue >>
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...  Continue >>
sorry / Jon Beaner     Read >>
conner / Pieter De Vries (rememberer)    Read >>
Conner / Maureen Camfield     Read >>
Beautiful / Kinny Schram (none)    Read >>
PRECIOUS CONNER  / Rachelle Pousson     Read >>
My Condolences  / Martina Connolly     Read >>
beautiful connor  / Donna     Read >>
God Bless You All  / Karen K. (just reader of your web-site )    Read >>
love / Nicola Wallace (dylan dicks friend )    Read >>
God Bless  / Ian Heinlein (aquantance)    Read >>
More tributes and condolences...
Click here to pay tribute or offer your condolences
His legacy
Spring 2014  
Our girls continue to grow. Cayden is now 7. Cailee 13. It has been 10 years now since our son Conner entered into rest. I find myself wondering often who he would be today. What his interests would be and what he would look like. We will meet son, on the other side. Until then, stay close to our hearts and we will love you forever.
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 !!
More of his legacy...
 
Conner's Photo Album
A proud daddy
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