This memorial website was created in the memory of our loved one, Clayton Mulligan who was born in Nebraska on July 09, 2002 and passed away on October 31, 2006 at the age of 4. We will remember him forever. 






His Brother's Site: http://joseph-mulligan-iv.memory-of.com/


      

Hello my name is Clayton Mulligan, I am an angel in heaven along with my older brother Joey. We lost our lives due to a disease called Sandhoff and this is my story. 

I was born on July 9, 2002. My mommy and daddy were so happy to have a new bundle of joy in their lives. The day I was born I was struggling to breathe so the doctors checked me over and they diagnosed me with Group-B Strep. After I fought my way through that and being hospitalized for ten days I went home and seemed to be a healthy baby, this was just the start to my courageous personality. I learned to roll over, sit up on my own, and I even learned to hold my own bottle. I did alot more than my older brother so my parents weren't to concerned, but they wanted to have me tested anyway since there was something wrong with my big brother. So when I was about 5 months old they did a skin biopsy on me and my parents never heard anything on that, so they did an eye exam. During the eye exam they noticed cherry red spots which they did not see in my brothers eyes. They gave mommy and daddy a list of possibilities as to what could be wrong with me. They did blood work and determined that I had Sandhoff Disease just as my brother Joey did. To read more about what Sandhoff disease is please go to www.sandhoff.org /. Over my first year I was still a heatlhy baby, but around my first birthday I stopped sitting up and rolling over. After watching the disease progression of my brother my parents knew that I was too getting weaker and this terrible disease was going to take my body over just as it had done with his. I am determined though to give it one heck of a fight! 


At 18 months seizures started. I was put on seizure meds. Its starting to hurt a little when my mommy and daddy pick me up because my muscles are getting sore and tight. I have lost control of most of my movements now, but I can still move my arms and legs some. I am a happy little guy though, I am for sure not ready to give in to anything. Soon I turned 2 and eating has been getting harder for me. I just cant quite seem to control my swallowing so well. I try, but I cough
alot, cause some food gets stuck in my throat. Its almost time for a feeding tube my parents say. Im not sure what that is yet, but I am sure its for the best. 

On Dec 23, 2004 the feeding tube was placed. I got a ng tube which goes down my nose and into my stomach. I dont have to struggle now to eat. Mommy just hooks me up to the machine and in comes food to my belly! It makes things much easier for me. Cause even though I am trying my best, Sandhoff is a hard thing to fight. I still promise though to try my hardest and fight as long as I can. 

Over the next year my body slipped further away from where my mind is. I feel so strong inside, but weak on the outside. I feel like I could live forever, but my body knows I cant. I get visits from angels now and then and they all tell me to hang on. My brother Joey talks to me alot and tells me how proud he is of me. When I turned 3 in July everyone was so happy. They all told me how proud they were of me, most people think this 3rd birthday will be my last, but maybe they dont know me as well as they think they do!! 

I am now about 3 years and 4 months and I started having convulsions. A friend of mine did this too, Im mad inside this body and cant move anymore. I can barely see, and I cant make any noise anymore. I am trying so hard to be strong and this is the way its coming out. Also I have gotten pnemonia several times in the last months. These lungs of mine are getting weak too I guess. Shall I remind you that most Sandhoff kids do not live past 3? I am stronger then them all and you will see too just how strong I am! Ok maybe strong isnt the word - maybe I am just being the 3 year old tempermental little boy I am supposto be hee hee its fun though! 

I have traveled alot over the past couple years and maybe I failed to mention before all the places I have been. I went to Florida, Maryland, California, Georgia, Lousiana, Virginia, Nevada, Minnesota, and even a couple others. Its fun to see places I have never been before. And its even more fun to see them with my parents.

I made it through all the holidays in 2005 and even went to my 3rd conference for diseases like mine. Everyone is more then shocked I am still here. I am 3 years and 9 months now and though I have had alot of health problems with pneumonias and other sicknesses I am still trying really hard to get to my 4th birthday. No one has done it before, but I know if I give it my all I will do it. I infact already have my angel date in mind - my nickname is Boo if that gives you any hints.!! 

On and off now my lungs are getting so weak, I just dont know how much more of this I can take. I see the angels more now - they know I have just about had enough. But they tell me they will help to give me strength. And guess what?? Today is my 4th birthday I did it. I made it to my 4th birthday like no other child has done before. Yeah for me Yeah!! I had a huge party and everyone in the world it seems is in shock. But I do have to admit this is getting harder and harder to keep going. 

Well its September 2006 and I am 2 months past my fourth birthday. I have been in and out of the hospital. All because I keep getting pneumonia over and over. It almost seems like we live in the hospital anymore. I love my family so much, I know how much they will miss me when I fly away, but soon I just must.

Its October now, and I feel inside like I am ready to take the journey home to heaven. My body just wont work anymore. My heart will miss you all. My spirit inside is ready to fly away. I am getting ready to join my brother Joey in Heaven. Please dont cry for me, I am going to be well soon. I am going to be able to run and play like I have never gotten to do before. I am 4 years and almost 4 months and I have given this Sandhoff disease all I can give it. Halloween morning is here and I want to say before I go that I will always love you Mommy and Daddy. I will love all of you that have been with me on this journey. I thank you all for your support and prayers, it has really kept me going. But now I must take these wings that God says I have earned and fly far
away into the clouds of Heaven. My battle here is over and my new life is going to begin. I will always be on earth in spirit, but tonight Im going trick or treating with my big brother Joey that I have missed you much. We are headed to heaven together he said he will hold my hand all the way there. So for now goodbye all, until we meet again.........

with love always
Clayton Mulligan                       



                                                                                     



      



                 


 



                                         A Little boy 
                                     A special friend
                                       A little fighter
                                    Right to the end. 
                                 Gone from our lives
                               But not from our hearts 
                           We'll keep you there always 
                           Like we have from the start. 

        
      


    


                        

                



Look at me I am a big brother now. Meet my baby brother Jayden Chance Mulligan. He was born on April 23, 2007. He weighed in at 6lbs. 2oz. and was 19 inches long. My mommy and daddy had test done on him to check for Sandhoff Disease and he is a healthy baby boy. Please be happy for my parents because they deserve this beautiful baby. He is now 19 months old and my parents couldn't be anymore proud of him!!!