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 !!

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

 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

Phone & Fax
904-232-4100 - phone
904-232-4125 - fax


Direct Mail

Phone & Fax
904-390-3600 - phone
904-390-3699 - fax

Today March 13th 2008 marks 4 years since Conner flew away to Heaven. This year feels a little odd for me, he has been gone now longer then he lived. He spent such a short amount of time here on Earth, and a lot of that time he was so sick and fighting to live just another day. Now its been 4 years that he has been able to be an angel and live with God in Heaven. The hurt is no less now then it was the day it happened - I guess maybe now I am more numb to the whole situation now. I live each and every day knowing one of my children in not with me, when others ask how many kids do you have I find myself always stuttering over the answer........ do I say 3 but one passed away? and then wait for the "oh Im so sorry" response - or do I say just 2 and wait for the new remark I get now "2 girls huh, are gonna try again for a little boy" or "I bet your husband still wishes for a boy?" I bite my lip with the response I would like to have back to that - every now and then when Im feeling annoyed in general I will say - "well I did have a little boy but he passed away, but thanks for asking!"

 I am thankful for the time I did have with our boy, I would not trade one second of that time for anything. So if you can hear me Conner - I want to say I love you, and I miss you. Watch over us, especially your sisters. Cailee still is very sad your gone, this morning she was crying. She is going to draw you a picture today and bring it to your wall later. Please never forget how important you were to us all. We are all still together in spirit.

Just a quick update --

Our girls are doing wonderful, Cayden just celebrated her 1st birthday. She is walking, talking and running from one end of the house to the next as if she has turned into a mini tornado!! All is great wonderful fun though. Cailee is nearing her birthday month when she will turn 7 years old on March 27th. She is doing terrific in school and has lots and lots of friends. We have moved the girls website to www.myspace.com/caileencayden but you must be a friend to view any of there pictures. With so many weirdos out these days I am getting a little worried about having their pictures displayed everywhere!!

Also we are nearing both Conners angel day on March 13th and his birthday which will be on March 30th - he will turn 8 in Heaven. Please take a moment to remember him, I dont ever want him to be forgotten!!

Thank you for continuing to think about our family,

Well I am so happy to finally report some good news!!

On Tuesday May 29th we received a call that was truly a gift from above.
Initially we had been told that Caydens blood work was inconclusive, and they wanted to retest her. We thought long and hard and decided that we were not going to have this done. She and us have been through enough. This has been a roller coaster, up and down and back and forth. We were just going to wait things out and see what the Heavens had in store for her and take things one day at a time.

But on Tuesday we received a call back from the genetics counselor - she explained that when the results were given to her, and through the reports and on the phone she had been talking to the lab tech assistant never the actual scientist that did her labs. She was calling them late last week to let them know that we had decided to wait for retesting and the scientist had been out of town.  He had just called her back to ask why we wanted the testing done again and if we doubted his results. She said no, I thought you were the one that wanted more samples from the baby because the results were inconclusive = he said NO I have already closed her case and she is a carrier, NOT AFFECTED BY SANDHOFF DISEASE, he said that if ever in the future things looked questionable he would be more then happy to retest again at a later date, but that he doubted there would ever be a need. She told him well I need to call the family right away and let them know. As she did and I cannot express to you the feelings that were lifted from me. It was like that weight that I had been carrying around for the last year suddenly went away and I could actually breathe again. I want to thank Dr Arns office for being more then understanding and compassionate in our journey to get our baby girls testing done and done correctly for once! Also I want to thank Desiree Hopf for taking the time you have to help us, along with Dr NGs office - you all have been so wonderful to our family.
This whole ordeal is not something I would ever recommend choosing to go through - if you are out there and reading this - please make sure you Demand testing done on your fetus prior to the cutoff dates and prior to becoming to late in your pregnancy. I tried and tried to get this all done early on, but it didnt seem to matter to them. They were going to do the testing if and when they were ready - it then soon got just too late to do anything, and it became no longer even an option to abort our baby. I know its everyones personal decision as to what to do with their own bodies and babies - but this all has been a living nightmare. Not knowing every single day if your brand new little life will live or die is unspeakable. Thank you to everyone out there that prayed for baby Cayden - God and the angels heard us all and she will now grow up and live a long and healthy life. 

Never stop believing because the Heavens do listen !!!!!

On May 14th 2007 Cayden had an eye exam to check for cherry red spots. Which is a tell tale sign of Sandhoff Disease. We are pleased to say that the dr found NONE!! Today May 15th we are headed to the genetic dr where they will be taking blood work to confirm Caydens health. We are really praying as is so many of our friends and family that she is infact healthy. All I can do right now is just say Thank you to them many that are praying for her, and keep the faith that she will be ok. Its really amazing to me how many people out there in this world dont want their own children and hurt them or do worse. But here we are a family that just simply has a prayer to God for him to be able to let us keep our child and not take her away. All of the families that I know whom have dealt with Sandhoff or its variants are wonderful people whom love their children more then anything. They would give anything in this world to be able to simply watch their children grow up. I can only think that the devil himself must be inside those parents that do not treat their children as simply what they are GIFTS! It makes me sick to think sometimes how much we would all give to not have to worry about what tomorrow will bring when so many out there just throw their babies away, or hurt and kill them. 
I am sorry to be ranting, but it just all really gets on my last nerve sometimes when I watch the news and hear of yet another child kidnapped, abused, killed etc. 

On a much lighter note. Here is Caydens 3 month picture!! 
KEEP THE PRAYERS GOING!!!!

Today St Patricks Day 2007 marks 3 years since we said goodbye to Conner and placed his little body to rest. As I sit and look down on our little baby Cayden I cant bare to think of loosing her if she has this disease. How can I do it again? 
Cayden turned one month on the 12th and she is growing and doing great. She is now 6.7 pounds and 19 inches long. The dr feels she is strong and will re order testing at 2-3 months of age. The initial testing done in the hospital was done incorrectly and no results were able to be given because the blood was clotted before it got to NY.  I think about everything day and night and cant get it all out of my head. Cailee is about to turn 6 and loves to help with her baby sister. I am trying to just keep the best possible positive attitude I can and pray for God to just let us keep Cayden and watch her grow up. Its amazing to me how deeply in love with your children you fall! All 3 of our kids are the love of my life and nothing would or could ever replace any of them. I hope Conner is visiting often and watching from Heaven on his sister he didnt get to meet in person and hope that he can pull some heavenly strings to let her be healthy. 
Conner we love you always and miss you so much. You are our little man and know you are our special angel forever.

Cayden Ray Watkins





We have chosen a name!! Cayden means spirit of battle, and Ray after my grandpa whom is in Heaven with Conner and for a "ray of hope" !

These pictures were taken on Thanksgiving day 2006. I am now 27 weeks pregnant and anxiously waiting for the birth of our new daughter. We still are very nervous about the health of our little girl, but all we can do is pray for her health. Still missing Conner, which we will never stop! Cailee is now 5 1/2 and has lost 2 teeth. She is growing up!  

How can something be so scary and something your so excited about? Its for us another pregnancy. We found out in June 2006 that we are expecting another baby. There is prenatal testing available, however here in our state cannot be done until 22 weeks along. This would force us to terminate somewhere between 25-28 weeks. This is almost unheard of in every of state, except here. This has all forced me into the decision to just not have the baby tested until birth. I can not take my small babies life into my own hands and ask for the heartbeat to be stopped. If its Gods will that we are given another Sandhoff baby, then so be it. Our chances are 25% that we will have another, I pray for the 75% we will not. There is nothing in the world I wouldnt give to prevent our baby from suffering from Sandhoff. But can not play God and end his or her life just on my say so. Most friends and family do not understand our decision and have found it so easy to express their opinions on this matter. Its amazing to me that so many, want us to terminate so late in pregnancy without ever walking in our shoes. I mean we are not talking about an average abortion if there is even such thing? but this would have to be a partial birth abortion. I would have to deliver the baby after they poked something into its brain or gave me a drug to stop its heartbeat. Then what? No I just cant do it. My baby would be so developed, and could have the chance to live on its own if it was born then.  They have explained all this to me already, and I just cant even imagine ... I understand that everyones decision in this so personal matter is their own. And what may be right for one family, may not be right for another. Please pray for us, and with us that our tiny new life will be healthy and free of Sandhoff. The babys due date is February 2007, and I will continue to update here in Conners legacy section because it is here that I find his legacy lives on. Here I am able to find the strength, courage and determination to make it through each and everyday. I know Conner is an angel, and he lives inside us forever. I thank you all for your prayers.