The characteristics of PKS are evident when you look at the children. These children look more like each other than their own siblings in many cases!
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Here are some real stories written by PKS families. They are touching and heartwarming and you'll be amazed at the children's tenacity!
Please take a minute to read this touching letter. It's written by a woman to her sister who had Pallister-Killian Syndrome and is a beautiful tribute not only to Michelle, but to all children, young or old, with PKS.
February 21, 1977-November 2, 2007
Dear Michelle:
You came into my life when I was 16 years old and very shy, but it was not long before you made me understand I needed to speak for you. You made our family strong. You were the true meaning of Determination.
Through you, our family became so much bigger, coming in contact with so many different people – meeting people, going places and doing things we probably would not have done. You gave your nieces and nephews an understanding and appreciation for life like no one could.
When you walked into the room, you took over. You were the first to say “hi, what’s your name, who are you. You loved life and everyone you met.
You never asked for help and often refused it. You would propel your body through the house amazing all of us.
You were extremely thoughtful – always thinking of mommy, Mary, the kids and the rest of our family. You left every party with desert in hand for Mary. Before you would accept a piece or cake for yourself, you told the server you needed one for Mary.
You made your daily trips with Mary to Dunkin Donuts for your Coffee Coolattas, and when unable they were brought to you. Very few days went by without a trip to Dunkin Donuts.
Your made shopping trips to CVS and Waldgreens to buy your magazines and would have a whole list in your head of things that you and mommy needed for the house.
You were so very organized – I would often call you “Little Gloria”.
Through all your problems and illnesses, you were always the first to ask everyone “how they were, how they felt”.
You baked cakes and brownies every day, supplying all of us.
When you saw me crying or upset, you would respond with – it’s ok honey, don’t cry honey” What’s the matter?
You were brutally honest, saying exactly what you meant, many times making Mommy cringe. After a while we learned to laugh because we knew you were right and we felt exactly the same way, but couldn’t say it.
You were not afraid of very much and would try almost anything. I remember the first time you went go cart racing. John put you in the car with him and he couldn’t go fast enough for you. Mommy stood there looking, so worried about you.
You would come in our pool, get in a tube and manage to swim around, never hesitating to splash everyone.
While you loved people, you also loved your pocketbooks, buying at least one a week, sometimes two, when one was for Mommy.
And, we cannot forget your dolls. You took care of your dolls like they were human. When at my house, you would take out your cell phone and call home to check on them, hang up and tell me you needed to go home to take care of Alicia and Lynn.
As I approached your bed to see you, you always told me not to worry. In your hospital bed, before you could be diagnosed or treated, your first words were “I want to go home”, when am I going home, trying to get up, hanging one foot out of the bed. You never spent time dwelling on your medical problems. As mommy put it, “you were always rearing to go”.
You never left her house without bags and goodies in tow. Mommy would comment that “you had to pack the whole house just to come around the corner”.
You loved to make collages for every occasion. When I would call the house, mommy would say you were “breaking it up with Mary”.
You enjoyed many nicknames – the latest being “Grandma”. You also enjoyed calling the family by many names – Victor was “Vooch”, John, my brother, was “whistle”, John, my husband, was “John Hellis”, and Aidan was “the boy”.
You were determined, defying the odds over and over again until now. You had a rule no one was allowed to say bye to you. When I teased you or when people did not listen or understand, you would bang on the table three hard times and then engage mommy’s help who would say to the person “just go, don’t say bye to her”. It’s ironic, Michelle you were true to your rule and did not give us that chance to say bye to you. We love you.
Lisa
