Our son was as perfect a little boy as the next one at birth. He went on to grow  and develop very normally. He started to babble mama at age 9 months, and had a pretty good vocabulary by age 2. He was standing at 9 months and walking at 11 months. He did all the other things well within the normal time. He was very playful and loved people. We went through the terrible twos and into the horrible threes neither of which were too terrible or too horrible. He was a very kind little boy. He began to show an interest in sports (most of all hockey, which today is still his favorite), and played very well for his age. He was a very smart child and his speech was articulate. You couldn’t ask for a healthier or better kid.

  At 4 years old he attended preschool. He had great teachers, a lot of friends, and loved to go. He took an interest in math at a young age and really excelled. Math was and still is his favorite subject. He had very neat hand writing for a child his age. In kindergarten he continued to do well. He met more new friends and always had someone to play with. He even had a little girlfriend. On his sixth birthday he had a street hockey party with 12 of his friends. It was shortly after that we found out that his father was ill with Huntington’s Disease. That following summer he became very shy. He could not tolerate a lot of people or loud noise. At his Grandfathers birthday party he hid under the table to get away from it all.

  When he was 7 and in the second grade he developed nervous tics. He went from squinting eyes to stiffening his entire body to throat noises, sniffing continually, and probably more. As soon as we made him aware of what he was doing he would stop and develop a new tic. At this time I made an appointment with the pediatrician. He referred us to a neurologist. They did a neurological exam, along with an MRI and A EEG. All were normal. They then recommended that we take him for counseling. The therapist thought he was probably under a lot of stress due to his father’s illness. Counseling continued, so did the tics.

  He joined little league. He had a hard time keeping up with the other children. A short while later his handwriting began to change. He always enjoyed the holidays, but this year was a little different. He didn’t seem as happy as he had always been. He showed signs of depression. We continued counseling. Their feelings were still the same. He’s having a hard time dealing with his father’s illness. We went back to the neurologist with even more concern. We told her about his father’s illness and she assured us that he was too young to show signs even if he did have the gene. She tried to comfort us by saying that if he were to have the gene his onset would not be for another 20 or 30 years and by then they will probably have a cure.

  The teachers at school started to notice a significant change.(He was now in the 5^th grade and 11 years old) He was having a hard time concentrating, his handwriting continued to decline, and his speech started to slur. He really started to struggle in order to keep up in school. He stayed for extra help several days a week. He was taking karate at the time 3-5 days a week. We started noticing a stiffness in his arms that he didn’t previously have.  At this time we became real uncomfortable with this issue. His pediatrician was also getting worried. Inside we felt that something was seriously wrong.

He was now entering the 6^th grade at the middle school. Through these past couple of years he had lost a lot of his friends and become withdrawn. Kids can be mean when someone has a problem .They don’t know how to handle it. Special ed some of the time seemed to be the only way to get through this year. It seemed to be a lonely time for him. It was very sad. He continued with his karate and got his black belt. That was a goal of his. It was a struggle. His speech steadily declined. This particular summer, was a summer from hell. His behavior changed rapidly. No one could do anything right. He was at the other children constantly. He got very aggressive. This was so unlike his nature. I had a lot of days when I just had to take the other children and leave the house for the day. We couldn’t handle it another day. We have a lot of days where we have to deal with one minute at a time.

  In the 7^th grade things continued to progress. School got harder and more classes became special ed classes. . I searched the internet. I learned that there was a juvenile form of huntingtons disease. When I read the symptoms I was really worried. It was as if I wrote it. The gym teacher had called me and thought he may have had a seizure in class. I immediately took him to his pediatrician. I told him I really needed some answers.. His pediatrician looked at me and said “I think it’s time to go to the Neurologist in Boston”. He feared the same as we did. We took him for another EEG. There were not any signs of seizure activity. This has not happened again since, and it has been 4 years. His behavior was like a Dr. Jekyl and Mr. Hyde. You never knew which it was going to be and for how long. Sometimes I would say “ Why do you act like this”? One day he answered me and said “I have what my father has”. I tried to make lite of it and I said “ What makes you say that”? “What do you think about it”? He would just say it “sucks”. I told him he was right, it does suck! Mean while we were waiting for our appointment in Boston. It finally came 2 months later. When he was examined, (neurologically), the doctor told him he looks good and that she would tell him at the first sign of huntington's she saw, if she were to see one. She told us he looked fine also. She asked us to make a follow up appointment. She wanted him to live a happy and good life and not worry that he was ill. He had himself convinced that he had huntington's disease. On the way home he was happier than we had seen him in months. He ran to the phone once we got home and called his grandmother and said ”I don’t have it”! When she asked him “have what” he said huntington's disease.

  Once we were home and he was settled I looked at my husband and said “How come I don’t feel happy”? He said he felt the same. I wasn’t convinced. I still felt something was wrong. Even though his handwriting, speech, memory and walking and coordination in general continued to change he seemed happier. I decided to have a total psychological and cognitive evaluation done at the hospital. He had already had this done through the school. When we got the results, I was not surprised. He scored very low and the doctor had written that he felt at this time he was no longer capable of learning. I did not totally agree with this. He could learn and retain but at a much slower rate. We had our follow up visit in Boston. The doctor once again told us that he looked good and asked how he was doing. I told her I needed to know if he had JHD. She said “he looks good’. I said I needed to know but she disagreed with me and said they do not test children under the age of 18. She said because there was no cure or treatment, it wasn’t necessary. All along we continued with therapy. The psychologist did not agree with the doctor. He thought that he was still treating himself as if he had it and if we had him tested that he would either be relieved that he was ok, or if not, we would all help him deal with it. Still being very uncomfortable I called the doctor and said I want to know what is wrong. She asked me why. I told her that if my son is terminally ill, I want to prioritize my life. She told me to do it anyway. I then demanded an answer and told her I would go elsewhere even if I had to fly somewhere to get answers. I told her I wanted an MRI done because he could have a brain tumor or something that could be treated. She agreed to that. After it was done she asked my husband and I to come and meet with a genetic councilor. We went in to learn everything we could about huntington's . We sat down, she looked at us and said “ We have the results of the MRI and it is consistent of that with someone with huntington's disease”. I cried, she cried, and it was the worst day of my life. Even though I knew all along, being told took away any little hope that I had, that I was wrong. She did not want him to know because he is watching his father deteriorate and felt that he was still knowledgeable enough to hurt himself. I was never real comfortable with this but he seemed happy and I couldn’t forgive myself if he did hurt himself. At first all I did was cry. Night after night and day after day. Finally one day I thought, we still have him ,and I’m going to do anything and everything I can now for him, and just enjoy him being here.

  I have often wished that he knew. It would be so much easier if we could just talk. He has told me in the past the he has huntington's but when I sat down and told him that we’re all there for him and that we will keeping hoping that they will find something to help him, he looked at me and said ”what are you talking about”? He just didn’t get it. I think now that he does know but doesn’t have the insight to know what it means. Most of the time he is pretty happy. He goes to visit his father in the hospital 2 or 3 times a week. He pushes him in his wheel chair and they eat ice cream together. He joins in the art and cooking classes at the hospital with the huntington's patients. He loves to go. Tewksbury Hospital is wonderful. They have a floor just for people with huntington's disease. They are all about living, not dying. They do all kinds of events and include all the patients. Nobody is just forgotten about.

  He now has one year and a couple of months left of school until he graduates. I really hope he makes it. Behavior continues to be off and on. It’s strange how he can be good for several months at a time but when it starts going downhill again you brace yourself and sometimes feel as if you can’t take it another minute. The negative behavior can also last for months at a time. More and more he acts like a young child, doing things that a 5 or 6 year old does. He can be very impulsive. After he is aggressive either physically or mentally he acts like nothing ever happened. You can’t reason with him at all. He looks at you and says “what’s your problem”. It is just forgotten. He is uninhibited with his speech and sometimes his actions. It can be scary at times, and embarrassing. He’s bigger and very strong now and is sometimes to hard for me to restrain. I also have younger children that I have to protect. His behavior in public is usually real good. He may say something that’s inappropriate but usually no one else notices. Most of the time after a bad day he will try to help out by doing chores or something nice for us.

  He has a heart of gold. He would never miss anyone’s birthday nor would he forget anyone at Christmas. He will ask to be taken to the mall and he will buy a gift for them with his own money. Every time he goes to a bruins game he buys himself a jersey and his little brother a bruins bear.

  When times are bad we just have to keep reminding ourselves that it’s the illness. I find that the busier he is the better he is. He needs structure and he needs routine. He has a hard time with free time. Since he doesn’t have friends out side of school to hang with and talk to we have to try to keep him busy. He has a part time job at the local supermarket bagging. They have been wonderful to him. He does work and he does do a good job, although he is slow. They do anything they can to accommodate him. The kids that work there are also very good to him. With the money he makes there he buys hockey, football, basketball and baseball jerseys. That’s become a hobby for him (also somewhat of an obsession).

  He is a huge sports fan. He loves all the Boston teams. I have to say though that his favorite is the Bruins. We try to get as many tickets for him as we can afford. My husband takes him to a lot of games. If we could afford it he would go to them all. This is what makes him happy. That’s what’s important. It’s hard sometimes when you’re trying to fit the rest of a his life into the next year or so, because we also have other children. We want them to also have nice memories that don’t just revolve around him being sick. It’s not an easy situation no matter how you look at it. We’re trying to make sure that everyone is ok.

There is not a day that goes by when he doesn’t fold my clothes or do a wash or two for me. There are times when all he wants to do is help us.

  He always wanted to succeed and would always do his best. Things are starting to change in school. He does not want to go to school anymore. We will do our best to keep him going. He says he has to get up early and it’s too hard. He has a very hard time sleeping at night now. Some nights he doesn’t sleep at all. He is very sore. We are trying to put in his own bathroom with a jacuzzi tub that will help him feel better. His limbs are a lot more rigid now.

  Speech is a big problem now. You can’t understand most of what he says. Handwriting has become pretty much illegible, although if he really takes his time you might be able to make out a few letters and figure out some words. His gait is way off and he doesn’t know his own space. He will bang into many things including people. His hands shake uncontrollably. His sisters will cut up his food at meal times because he can no longer do it.

  The summer is coming and will bring with it a host of challenges. Will he be able to swim? Once a pretty good swimmer he had to be pulled from the pool by my husband several times last year. It’s heartbreaking. Will he be able to drive his go-kart? It’s probably not a good idea even with my husband with him. We often wonder what he thinks. I try to talk to him about it and he doesn’t get it. The important thing is to make him happy.

            Well the summer came and it was nice going to our place in Maine. He did drive his go kart but after bouncing off a few trees and veering off the road it got a permanent flat tire. It is no longer safe for Mike to drive it. That was one of his favorite things to do. He was still able to enjoy the water although he needs a life jacket full time and constant supervision. As this nasty disease continues its course of destruction, all the things he loves in life are going away, one by one.

            It is the beginning of his senior year in high school. The teachers are wonderful, accommodating all his needs as I advocate for him explaining the changes day to day, week to week. He makes it to school about 3 to 5 days a week. If he cannot sleep the night before he cannot get up for school the next day. I have been called to the school several times for what we believe were seizures. It’s very frightening to see your child lying on the floor white as a ghost and his lips grey and shaking uncontrollably. All I could do is rub his back until he was better, then take him home to rest. It’s very upsetting as he looks up at me as if to ask what is going on. It’s so hard to not be able to tell him things will get better

 Mike is in all special needs classes. He tells me he knows he has Huntington's disease because he used to get a’s and is now in these special classes. I sat and talked to him about it for a half hour. When we were done I told him we would always be there for him and he looked at me and said ”What are you talking about”? He had forgotten our conversation. Soon it will be graduation day. Mike’s teachers told me that even though he misses some days of school he always hands in his work completed. They are amazed at how he continues to go on with his work. One of our challenges was to have Mike receive a diploma and not a certificate of completion when he graduated, Unfortunatly we didn’t win this one. He was not capable of taking the mcas and the rules are if you don’t take it you don’t get a diploma, instead you receive a certificate saying you put in your 12 years. How sad. This was very upsetting to him. And, unfortunately, where he is going he doesn’t need the mcas. It’s very sad , `they,(The state), would not make an exception. They told us this is the first year you need to pass the mcas to get a diploma and there were no exceptions. How sad is that when it was such an effort for him to make it to school? He probably worked harder than anyone.

Graduation day is here. Mike looked great. He was so proud and his family were all so proud of him. It was a little different. As he was receiving his diploma he was on channel 7 news . They were explaining Huntington's disease and how we were told this day would never come. After graduation a lot of the kids were bouncing around party to party with their friends. Mike came home and was greeted by his friends. Sergei Samsonov from the Boston Bruins who has been wonderful to Mike and a great friend for the past several years was there to congratulate him and have a clam bake with about 85 other friends and relatives. It was a wonderful party. He had a couple of friends from Hannaford where he works bagging groceries that are wonderful to him, and 1 friend from school. It’s too bad that kids that age are intimidated by a disease and choose not to come around. That has been very sad. All the kids he went to school with just went on with their own lives never bothering to come by and visit. Another heartbreaker was that he was around all these kids as they talked about their plans for college. He told us that he had some good news and some bad news. He said” The good news is that I am going to Harvard, and the bad news is you have to pay”!  If this disease had not intruded on his life I bet he would have gone to Harvard. I would give anything for things to be different for him. I guess that’s just not my choice.

Since graduation, Mike’s socializing is limited to his working at Hannaford and the people that are involved with Mike’s Wish Foundation. His motor skills have continued to decline but he will never complain. He is very happy to go to work and bring home a paycheck every week. He always looks forward to that up coming Bruins game when he will be able to go in and buy a new jersey with the money he has worked so hard for. For Mike earning that money is very hard work. His hands are becoming more and more crippled daily so opening a grocery bag is a big chore but he will never tell you how hard it is for him. He is still able to speak some and continue on his work but he can no longer work more than 3 days a week.

              Now Mike’s sister 2 ½ years younger is graduating from high school. She is going to college which stirs up some sadness in Mike as he still wants to attend college but congratulates her and says “Good Luck”.               

              The next year his sister that is 4 years younger gets her drivers license. Mike always wanted to drive. He wanted to drive a green volkswagon bug or a lambrogini!! Quite a big difference!!! Anyway..he congratulated her too and told her she is very lucky. She does take Mike out to the movies and McDonalds or to the malls. He loves to go with her.

              Now things are going downhill rapidly. You can no longer understand what Mike is saying. I, being his mother and being with him all the time have to really concentrate to understand what he is trying to tell me. He tries so hard to communicate with others but no one can make out what he is saying. Our friends are wonderful, all taking the time to talk with him and make him feel part of the crowd. So many others just walk away because they don’t know what he’s saying and not realizing that he understands everything you say to him and what’s going on.         

              We approached the time where Mike was no longer safe at our home. We had a split level and Mike couldn’t avoid steps there as they were very dangerous to him. He fell down them many times. We started looking around for something safer but with only one income buying and building was out of the question. We were determined to keep him home with us always. Fortunately for Mike and our family my Dad who lives close buy offered to let us take down his home and build handicap accessible and what we needed to take care of Mike and keep him with us. We sold our home and took my Dad up on his offer. My mother had just passed away and my Dad was there alone. He has a big wing off the kitchen and seems to be happy.

              We have always spent weekends at our place on the lake in Maine. This past summer was the last for that too. It took me 20 minutes to get him into the house and then he was miserable. He can no longer go fishing like the other guys, swim in the lake with the kids or even walk the terrain. We cannot even get him in the boat. It was so heartbreaking to watch him be so sad. We placed our camp on the market. It will never again be the same and I have been there since I was 3. At least if we sell it I know I can keep him home and be able to hire some help for him. I hope I will be able to do anything he needs. My other children are upset of course but they understand and want him home too. They have all been wonderful giving me a break and helping him. They have given up a lot.

              Now Mike has been asked to retire from Hannaford because he can no longer do his job and because he is falling often at work. He was devastated. I have made little chores at home and I give him a paycheck each week but the reality is it is getting extremely hard because he really can’t do anything. Of course he will always get his pay. He likes it because I don’t take out taxes!!! I take him to visit his friends at the store once a week.

 The one thing Mike does have is Mike’s Wish. I let him think of ideas and different donations that we can ask for and it makes him very happy when things come in. He loves the night of the benefit. He is the star and is so happy. He always loved dancing with his friends from work. Unfortunately, I am afraid that last year was his last dance. Mike is struggling to walk. He falls constantly. When I take him out (which I try to do at least twice a week) He has to be in a wheel chair. Mike can no longer shower, feed himself, or do any other daily things to care for himself. We are rapidly entering the stage where he will no longer be able to swallow. He chokes all the time. Mike is on 3 ensure plus a day along with as much food as I can give him. A year ago Mike loved to eat. It has become so very hard for him now. Mike’s care has become 24/7. He is very grateful for everything everyone does for him thanking us constantly.

Mikey was looking forward to November when he would once again see all his friends and be the star at Mike’s Wish Foundations 7^th annual benefit/auction. This year was much different. Mike could no longer stand up and dance. One of his good friends took him in his wheel chair on the dance floor and pushed him around to the music. He still smiled and made the best of it. He was happy so many people were there. We had wonderful family holidays as always, but for Mike it was a struggle. Behind his smile I could see the pain. It was heartbreaking.

I would walk with Mike about 10 times a day assisting him by holding his arms. That was good exercise for him and he did well with some help. One night in January something terrible happened to Mike. I found him lying on the floor soaked with sweat. Mike would never try to get up without me. He had a fever and was dehydrated. I called the doctor and they checked him out but said he was ok. Mike was not ok. Mike’s feet never touched the ground again. He had been having hallucinations for awhile that made him very afraid. I still never really understood what he was seeing other than it was something he was terrified of. I could not comfort him even a little bit. He also fought fevers up to 105 off and on. There were no answers. I would sleep next to him at night trying to make him feel safe. It started to consume all his days and nights. He went through a period that he did not sleep for about 2 weeks. I stayed with him day and night until I only got 10 hours sleep out of 96 hours. I got sick and I was exhausted. I called his doctor and had him admitted to the hospital to change around his medications. The doctors thought one of the meds could be causing the hallucinations. He all of a sudden could not eat. He couldn’t form his mouth to keep the food in. After a few days we found ways to help him eat. Everything now had to be pureed. Eating was really the only thing Mike had left that he enjoyed. Now foods were very limited. He could choke even on pureed food. The doctor said we had 2 choices. He would either need a feeding tube and no longer eat anything by mouth or taste anything or he could keep trying to eat knowing he would aspirate at some point. The doctor said if that happens sometimes they can fix it but eventually they will not be able to. Mike would want to eat and taste, not be tube fed. He came home from the hospital after 11 days of changing and trying out meds and seeing all the top specialists. He was bed ridden completely now. Karen, a good friend of mine who is a nurse would come over and help me lift him into his shower chair so I could give him a shower. She helped me take care of him so we could keep him home. I would take care of Mike during the day. When my husband came home I would clean up from supper and go to bed for a few hours and he would take over until he had to go to bed ( He had to get up early for work), then I would get up about midnight and go again until after supper. Karen would come over when she could to give me a break.

I kept feeling that something was wrong that could be fixed.  I had the VNA come and do a urinalysis. It showed he had an infection. He went on medication and got a little better. He could swallow a little more and I felt confident I would be able to get him up and walk him again. A couple of weeks later he started having a harder time eating and was coughing a little. Some days were better than others.

Mike went on medicine again for a week and once again got a little better. A short time after that he became sick one day after lunch. I thought he was just sick to his stomach. As the afternoon went on he was coughing a little . By supper time Mike was breathing hard and my husband agreed we should call an ambulance and have them check his oxygen. They came and couldn’t get a reading above 72. We rushed to the hospital. Mike’s fever continued to rise. It was 104 when we arrived at the hospital. After medication it continued to rise to 105.2. At first the doctors said he would be ok. After a few hours they said he may only have a couple of days. Mike continued to get weaker and weaker. Watching my son suffer and trying so hard to breathe is something I will never forget. I couldn’t help him. I held him and kissed him and told him he was a great kid ,an incredible fighter and I love him so much. I also told him that it was ok to stop fighting. He did. It turned out Mike only had a few hours. Mike passed away on April 25,2008. When Mike died a part of me died with him. Everyday has been a struggle. It has not gotten easier.

I know someway somehow Mike knows that although there is one less plate at the table and there will be one less stocking hanging from the fire place that there are many memories of him that we will all share. It will never be the same and never be ok. It will be tough. He will always be with us. My 11 year old asked if we could go to the cemetery on Mike’s birthday and send him another message on balloons. We will be there. Always.

Mike, I miss you buddy. You are my hero. You are the first thought of my every day and my last before sleep, with many in between. I wish I could have one last hug. But I guess I did. I only feel comfort in knowing you are no longer in pain and no longer suffering. Until we are together again……..I love you. MOM

Mike you will live on through Mike Wish Foundation. We will be working harder than ever trying to fulfill your wish and also to help provide assistance to other terminally ill children.