Monday, March 21, 2011

A Father's Perspective on His Very Sick Kid


This blog entry is for my fellow fathers, those that have had to suffer the pain of hearing that one or more of their beloved children is terminally ill.  Our son Reed has Sanfilippo syndrome, which is a rare, terminal genetic disease with no known treatment.  The disease causes nueeuodegeneration and a child that appears to grow normally for the first few years will slow developmentally, regress and finally die typically around fifteen.

As someone commented the other day, online communities like Facebook have brought together these rare disease communities.  It is a mixed blessing.  While I get the benefit of knowing parents in similar situations I also learn about all the poor children that die and see the pictures of where my sweet boy might end up.  Reed, my son, is only three and almost no one would guess that anything is wrong with him.  We got an early diagnosis.  That gives us time to fight and gives purpose to my life.  For that I am grateful.  At the same time, it feels often like I am trying to lift a bus off of him.

While I have met a few MPS III dads, I know far more moms.  The moms are more active in the forums.  They constantly send prayers to one another and cherish the small victories that each other obtain.  These moms are awesome, my hats off to them.  I am in awe of their grace and strength.

I probably know less than ten Sanfilippo dads.  For all you others, I feel like I know you because I have taken a few steps in your shoes.  The experience of a dad may be different from the mom.  We typically see ourselves as the providers and protectors of the family.  Speaking for myself, the guilt of not being able to protect and help my son was overwhelming.   My anguish reached a point where I could almost not function.  I took medications, spoke to a therapist, anything I could think of to help.  The meds did help...but I did one thing that helped even more.

I forgave myself.  Stupid as that may sound, I sat down and told myself that I will do everything I can and that none of us are guaranteed a single day.  I should be grateful for this day I just had and give praise to God.

I am a Christian and in my faith we believe that God sacrificied his only son to cleanse away our sin.  I figured if God could forgive me I should try to forgive myself.  

Over the last two weeks, my conscious effort to remain positive has opened doors that I would have never expected.  Someday I will share these stories with you...but not yet.

One thing for sure has happened, people are more open to me.  Having a very sick kid causes some people to move close and others to run away.  No problem, I honestly shut down when I see really bad news about the older Sanfilppo kids too.  It doesn't  mean I don't love them, it is just that I can't deal with processing another loss right now.

My takeaway: whether you have sick kids or not, enjoy each moment with them.  This life is short.  Do your best, love God and forgive yourself.

All my best,


  1. I feel for all of you in the Sanfilippo community. I cannot even begin to imagine what you must go through every day - my thoughts and prayers are with you. Please stay strong and cherish every moment you have with your beautiful son. Life is way too short to spend it beating yourself up about anything. I'll keep my fingers crossed and pray that they find a treatment or cure soon for this devastating illness.

  2. Hi Roy, I am also a father of four boys, two of whom have Sanfilippo also with an early diagnosise. Zac is going to be 21yrs next month and Jordan just turned 16yrs old. It does help with an early diagnosise, but the pain is longer, friends and family cant cope so they leave, and people that you didnt think would be friends are great friends. Although my boys are terminal, they are happy and healthy. I cant remember when they were last ill. The experiences that we have had would scare you and would make you roll around with laughter. The doctors tell you horror stories and then you experience the love and joy of our children. I have attended many conferences and met many family in our situation, and the stories that you share are unbievable, I dont go to church, but I believe. I also know I wouldnt be without the boys, they change your views on life. I get more cuddles from Zac and Jordy then the two unaffected boys, Zac jumps on me and gives me love slaps that almost knock me out. They climbs into my bed most nights. I have been slapped with a hand full of what was in his nappy, laugh now but it wasnt funny when it happened. Check out my sons facebook 'zac james' my wife does his facebook and has mastered his sence of human perfectly. If you want to chat I am here.
    All the best Andy

  3. I am going to check out Zac's page right now! Sounds like a funny kid.

  4. Kevin O'ConnorMarch 21, 2011 at 8:39 PM

    Hit it on the head. My daughter Emily was diagnosed last May with MPSIIIA. She just turned 6 so the last 2-3 years were a guessing game. You are exactly right that there are just a few Dads that post. I usually type on Danielle's site becasue she is more active than I am. I do read the sites everyday though. I agree that it can be a blessing and a curse reading and being in contact with all our families. I too have decided to take the positive road and leave the timing to God. I have done this throughout my life particularly at work as a police officer. I can't worry about when or if something is going to happen. I try to look at every day with Emily as a gift and probably appreciate things a little more than I ever would have. I am grateful for all those who share their thoughts and prayers and realize we are not alone and that there are other people who actually understand what we are going through. I also realize that knowing about their problems, joys, and daily adventures makes that bus for me not seem so heavy. Dads like us need to realize just like the moms have that there are other men out there feeling EXACTLY the way you do. We have a different way of dealing with things but it doesn't mean we are immune to the pain, anguish, and frustration that comes with learning that there is little we can do to change the outcome. HOPE is a very powerful thing along with FAITH. NEVER give up on either. There are more of us out here than we both know. Email Anytime.

  5. Kevin, thanks. Your daughter is beautiful. I have watched her site and read her story. Congrats to you guys on the great school. I definitely look forward to meeting you some time. --Roy

  6. Eileen O'ConnorMarch 22, 2011 at 1:34 PM

    To all the Wonderful Dads and Moms out there who are the bravest people I have ever known, especially my son Kevin and daughter in law, Danielle. I have watched them struggle with this terrible illness and still smile even while their hearts are breaking. They are strong and loving parents. Their involvement in their daughter Emily's care and happiness are their prime concern everyday. Yet, they still have their other five children to raise and keep things as normal as possible for them too. I just don't know how they do this. Yes, they have days that are truly worse than any of us can imagine unless you are a parent of one of these beautiful children but they muddle through with a strength I am sure they don't even know they possess. I hope Kevin and Danielle know that their whole family is so very proud of them and will be there for them always in any way we can. There is a song I don't know who the author is but the words include "There's always gonna be another mountain, doesn't matter how you get there, it's the climb" and these two parents and all you other parents out there are making that climb any way you can and doing it wonderfully and bravely. My prayers are with all of you and your children. God bless you all and keep you.
    Emily's Grandma

  7. Hi Roy, I too am a father of a special child of MPS III. We got a late diagnosis though, not until she was 10 years old did we finally get the news. Rachelle is almost 17 now and completely bedridden, on a Gtube, oxygen, morphine, kepra(for seizures, kadien, phenabarbital and a liquid diet of Jevity formula. I too have struggled through the emotional roller coaster with my wife through Rachelles heartbreaking condition. I have to admit that the lessons in human suffering and how I perceive the short length of this life here on earth has been magnified to me like no other experience but through God's timeline only. We should cherish these few days on earth with our loved ones because its just a speck on the time line of eternity that we'll spend with Jesus Christ in His Kingdom if we love and trust in Him for the purpose of all things present and things to come.Read Romans 8:28 and 1 Cor.2:9