Simon Ibell passed away peacefully in his sleep on Friday, May 26.  Survived by his devoted mother Marie, father Roger, sister Olivia, brother-in-law Cameron, niece Emily and nephew Andrew.  He will be missed by his many friends.  He will be remembered forever as a loving son, brother, best ‘unkie’ and friend.

Kobe passed away peacefully on November 7, 2016 at the age of 11 in the arms of his loving and devoted parents, Candice and Michael.  

Kobe will be missed by his great grandmother Betty (GG); his grandparents: Mini (Grandma) and Gary (Motorcycle Grandpa), and Cathy (Grandma Cathy), Stan (Grandpa Taylor) and the late Giselle; his aunts and uncles Adam, Dwayne, Laurie and Anne; as well as his extended family, cousins and many, many friends.

Eulogy Excerpt

Billy, known to his biological family as Alf, was born at Soldiers’ Memorial Hospital in Orillia on October 9, 1997. Along with his twin brother Bobby, he was one of 10 children born to Matilda and Joseph. These children included Cory, Donna, April, Rachel, Joseph, Billy, Bobby, PJ, Jessie and Tessie. What a full house!

Billy was quite a handful, and he spent some of his early life living with relatives in Newfoundland. Finally, his parents thought that Michael and Aubrey would make a good set of parents for Billy, and they took over Billy’s care.

Billy arrived on a bright Thursday morning with his backpack for a weekend of respite care, and ended up staying for over 20 years.  Michael and Aubrey started out this adventure thinking “What have we got ourselves into?”, but soon recognized that gift from God that Billy truly was.

Billy also loved his church family here at St. Andrew’s, and was loved by them. From our first Sunday here, through to the last time that Billy was able to attend service, he would sit in the front corner, in his wheelchair, and giggle—or shout—along with the hymns, and occasionally with the sermons! Truly, there was never a dull moment with Billy around.

The past couple of years have not been easy ones for Billy or for his families. Obstacles were put in place that prevented Billy and his families from spending as much time with each other as they would have liked. But Billy’s love for his families, and his families’ love for him, never wavered.  His eyes would light up, and his smile would appear, whenever he heard those familiar voices or felt the touch of his loved ones’ hands, or their kisses on his cheeks, or when they would sing his favourite songs to him:

“You are our sunshine, our only sunshine
You make us happy when skies are grey
We know you know, dear, how much we love you
You will never be far away!”

A kind, gentle and loving soul has been taken from us far too early. – After a courageous battle with MPS, Justin passed away peacefully at his home, on Friday, July 1, 2016, with his family and faithful dog, Gizmo, by his side, at the age of 34. Beloved son of Paul and Debi. Loved brother of Ashlee (Scott) Rathwell. Adored uncle of Paislee and Brooklyn. Cherished grandson of Rupert “Slim” and the late Connie Graham, and Maria and the late Mike Van Herrewegen. Dear nephew of Lynda (Ed) Jones, Pat Green, Doug (Kathy) Graham, Brian (Lorri) Graham, and Mike (Karen) Graham. He will also be missed by his great aunt, many cousins, extended family, friends, and his online buddies. Justin was a devoted member of several car clubs, and the open road will not be the same without him. His loving, selfless, adventurous and sentimental spirit will be terribly missed by all, and his gentle hugs will be treasured forever.

Author: Anne Cairns

Sadly, Sebastien passed away March 20, 2014. He was 13 years old. He is lovingly remembered by his family and friends, and by all who knew him from the Society.

Hello everyone,

I want to give everyone an update on our little man Sebastien, who is not so little anymore as he will be 13 this July 11^th.

We moved one year ago and really did not know how Sebastien was going to adjust to changing schools. Well, it happened to be one of the best moves we ever made! As the disease progresses, things slow down, but to our amazement Sebastien has been picking up new skills. We purchased an iPad last year feeling that if we needed it, Sebastien could watch his favorite movies from wherever he was. Upon starting at his new school, we discussed downloading a few programs if needed. They began working on the computer right away ,and to our amazement he started paying attention to it.

This fall after meeting with his teacher Mrs. Lonsway and Sebastien’s speech and language pathologist Mrs. Karen Barron, we went ahead and purchased a program called “Go Talk Now”. With the help of everyone and especially Mrs. Wang his EA at school, Sebastien has been using it every day for his food, book and song choices…incredible!

I must admit we are so incredibly fortunate to have such an amazing team of people surrounding and supporting Sebastien. With Mrs. Lonsway’s leadership, Endeavor York Region Public School Board had its first ability week.

Each day had a different theme, and the very first day was Hunter Syndrome awareness! (Thank you to the Society for sending all the info and stickers to Mrs. Lonsway!)

As for Sebastien’s health (which has always kept us in check, especially with the issue of a reoccurring pancreatitis that has appeared in 2011), he continues to defy the odds. He never ceases to amaze us. But then again we all know how strong all our MPS children are!

We continue to make each day the best it can be: quality versus quantity is our motto. And you know what, it has worked beautifully so far!

Take care everyone!

Anne, Alex and Sebastien

After overcoming many obstacles thrown in his way, Damien finally met a challenge he could not overcome.   The genetic disorder with which he was born, Morquio syndrome, finally caught up with him on March 3, 2011.  In 18 ½ years, he accomplished so much and showed others just how far determination and persistence can get you.  Damien left a lasting mark on all with whom he interacted.  He leaves behind three sisters, Natasha, Samantha and Alexa, his parents, Corri & Andrew and his grandparents, Frank & Verle, and Betty, as well as cousins, aunts, uncles and family friends.

Damien is an active and inquisitive 7-year old who was diagnosed when he was 3 years old with Morquio Syndrome. He has three younger sisters of whom one is also affected with Morquio.

Damien loves to read, play with Lego, ride his bike and play with his sisters. He enjoys going to school and participates fully and actively in his class. There need to be some modifications in gym to accommodate his height and slower mobility but he is definitely involved at school. At home, he makes his own breakfast, dresses himself, sets the table for dinner and keeps his room as tidy as any 7-year old does.

Over the past four years Damien has had two major orthopedic surgeries to correct his knock-knees. One surgery involved his lower legs. For this surgery he was wheelchair bound for 8 weeks and then in walking casts for 4 weeks. The other surgery involved his hips and he was in a body cast for 6 weeks and then wheelchair bound for 3 weeks before he started to walk again. Both of these surgeries have straightened his legs but leg braces have maintained the gains of the surgeries as the ligaments are badly stretched from the knock knees.

Although Damien has a number of specialists involved in his life, he maintains a positive attitude about things. On occasion he needs to talk about being different or how something can be adapted so he can participate in it or use something but he rarely lets Morquio slow him down.

Hi, My name is Kerrin Bankert.  My birthday is May 7th, 1993.  You may have already read about my brother Matthew in November 2000, Child of the Month.  When I was about 5 months old Mom and Dad started to investigate why Matt wasn’t developing like they thought he should.  They had no idea that anything could possibly be wrong with me as I certainly was a healthy little girl.  Mom and Dad took me for tests after Matthew was diagnosed to confirm what I suppose they already knew.  I too have Sanfilippo Syndrome Type IIIA.

As a baby I appeared very healthy and normal although I did have a lot of ear and throat infections.  I went to the hospital to get my tonsils and adenoids out and tubes put in my ears then I didn’t get sick quite so often.  Mom kept a calendar with all my milestones like when I first sat up, rolled, crept, walked and talked and everything seemed to right on target but still that test showed that one day things would change.  I played hard and enjoyed every day.  I was proud of all the things I could do.

When I was almost 3 years old I waited for the day that Mom would let me stay a preschool and play like Matthew did.  I loved to play with the dishes in the kitchen center and would bake and cook lots of things.  One of my favorite sayings was “don’t burn it.”  Another of my favorite activities was playing store lady.  We would go to the grocery store and buy groceries and then we would “pay the lady.”  I could talk a lot then and it would be doubtful that anyone would have known that I had MPS.  At home I love to watch Barney.  My favorite song is “I’ve been working on the railroad” and I used to be able to sing the whole song all by myself.  When the weather was nice we took lots of walks to Grandma and Grandpa’s farm.  I loved to feed the cows.

Then I started kindergarten.  I was able to manage in the class without much extra supervision.  But by Christmas that year (1998) I became a very busy girl, often I didn’t listen and would run off down the hall.  I wasn’t being naughty, but I just had to run!  I didn’t understand why I was doing the things I did.  I was starting to lose the words that I had learned.  By the time I returned to school the next fall I had lost all of my words but I was still able to sing portions of my favourite songs.  Now I am in a segregated Special Class at a Public School along with my brother Matt.  I like the bus ride to school and love to play on the playground and visit the sensory room.  Everyone is so nice to me at school.

Just because I can no longer say words or sing the songs I used to sing does not mean that I am quiet.  I have made up my own song that has a melody with my very own sounds and tune.  I know it makes my Mom and Dad happy when I sing as they always smile and hug me, and my little sister calls me her “song bird”.  Sometimes the song I sing turns into a very sad one.  My mood swings from happy to sad often in the late afternoon and in the evening.  I get very irritable and upset.  I will cry, rub my face and become very restless.  No one understands, I can’t tell anyone how I feel and usually I cannot be consoled even though everyone tries.  But as quickly as I become sad I can flip back to being happy again.

At home we have lots of special helpers that help Mom and Dad take care of Matt and I.  Things get pretty busy at our house!!  My sister Lianne loves me and hugs me a lot, but she really gets upset when I pull barrettes out of her hair or stand right in front of the TV.  Our Yellow Lab, Franklin keeps me company when I play outside and he goes for walks with us.  We have a nice new big bathroom at our house that makes bath time fun and an elevator because Matt can no longer go up and down the stairs.  My cousin Jenn painted a mural of a tree on the wall in the elevator.  It is so fun to watch all the forest animals go by when we ride the elevator.  This summer we purchased a new accessible van and I love it because we have been able to go places like to Grandma and Grandpa’s house, summer camp and to the petting zoo the mall and the grocery store.

Living with MPS isn’t easy, but I am part of a very special family and we all love each other a whole bunch.

Matthew passed away on August 19, 2006, at the age of 15.  He is lovingly remembered by his family and friends, and by all who knew him from the Society.

Hello, my name is Matthew. When I was 2 years old I attended a daycare. The supervisor at the daycare told my Mom and Dad that I was speech delayed and very inattentive. This was the beginning of a lengthy search until I was finally diagnosed at the age of 4 years with Sanfilippo Type B Syndrome.

I am much different from those early days of hyperactivity, aggression and long sleepless nights. But through all that, my parents called me “laughing boy” because I was always laughing and getting into some sort of trouble.

I loved looking at Spot books, Sesame Street books, photographs, going to school and to the park. Above all, I loved eating and watching Barney.

I continued to have severe ear infections and colds until I was about 6 years old. Unfortunately, as my health started to improve I started to lose my speech. It was a very slow process that took about a year. My last word was “K” which stands for “Katie”, my little sister. She makes me laugh and smile even now. Although I don’t have any speech left my needs are continually being met, and I somehow get the message across. Actually, I pop my mouth when I’m really happy. I also make a smooching noise when I want attention or more to drink or eat.

I am 9 years old now. I attend school full time and I am integrated into a regular grade 4 classroom for some of the day. I have some really special friends that come and sit with me over the lunch hour and recess. They put on circus shows and draw me great pictures. I have been invited to a few birthday parties which is really cool. I had my own first real birthday party last year and all my friends came. We went swimming, had pizza, played bingo, and they all brought me neat gifts. I feel very lucky to have these special friends.

I have always had special care from great Teachers and Educational Assistants. It takes very patient and caring people to look after all my needs. They feed me, change me, and give me as much exercise as they can to help me to continue to walk. They help to foster friendships and communicate with my parents so that everyone knows what is happening. Every year John XXIII School holds a cupcake sale to raise funds for the Canadian MPS Society. Katie says I’m famous because everyone knows who I am.

We have a lot of people that come into our home to help my Mom and Dad to take of me and give them breaks. I consider these people to be my friends. We go out into the community, we play ball, watch Barney and they feed me my meals.

I am still able to walk but I must have assistance as I have trouble walking on my own. I rely on total personal care, however I am still able to feed myself Cheerios in the morning. I sleep relatively well, I think it’s due to the Tegretol that controls my seizures. I am very quiet and I need lots of prompting and interaction from those around me to keep me stimulated. Most recently my Mom has been investigating Sensory Integration. I love my new fibre optic light and the tube aquarium that has lots of bubbles and bright lights.

I know my Mom and Dad are sad at times, but they are always telling me that I am a gift and that I have taught them things that they would never had had the opportunity to know if it weren’t for me. I think I’m lucky to be able to give this gift.

Written by Rob Di Ilio, Matthew’s Father