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     I had rope marks on my arms from being tied up hog style. These
     are the memories which today, as an adult, cause me to wake up
     with night terrors and, night sweats, crying and sobbing or
     sometimes fighting Al off in my sleep.
     One day my mother snapped. I was in third grade. I was getting
     ready for bed and my mother was brushing my teeth. My mother
     wanted me to lift my tongue and I just couldn’t. So my mother
     slapped me for not paying attention and for not listening to her.
     I still have the scar across my right cheek. The slap left a huge
     noticeable bruise; I went to school and had to tell a lie to my
     teacher that I hadn’t listened to my mother when it was time to
     put my coloring crayons away. My teacher called Children’s Aid
     (Social Services). Little does she know the impact. She probably
     saved my life.
     The police came to the school and picked me up. There was a
     social worker in the back seat telling me, “It’s ok. You’re
     safe now.” She said, “Everything is going to be all right.”
     That social worker started the investigation and asked me tons of
     questions. I denied any type of abuse at the time because I was
     too scared of what would happen if Al found out and I had to go
     back home. I told a lawyer who was appointed to represent me,
     that my three wishes were for everyone to have peace, for the
     stars to stay in the sky, and that I wanted to live with my
     grandma.
     I was placed in a foster home until my grandma was able to get
     court-ordered custody of me. I believe I was at the foster home
     for a year. I still attended the same school, wondering if Al
     would ever show up. He did one day, saw me behind a fence playing
     with some friends, and said, “Can I have a hug?” I told him
     “NO!” and ran to my teacher and he took off.
     My foster home was full of kids who were there for different
     kinds of reasons. I shared my room with another foster kid. The
     family was a very nice, warm, loving Jamaican family. I only
     remember their first names were Joy and Lambert. They gave me my
     first taste of Jamaican ox tail with beans and rice. That became
     my new favorite dish.
     I learned how rules were really made. There was a list of rules
     in our bedrooms for us to remember– cleaning up after
     ourselves, as well as keeping the bedrooms clean. I learned how
     to do house work the right way without being yelled at if I
     washed a dish the wrong way. I had Christmas there that year. I
     got my first pair of ice skates from my foster father, the only
     man who showed he cared about me other than my grandpa.
     My grandma finally got custody of me when my mother gave up her
     rights. When I saw my grandma for the first time after a year, I
     had forgotten what she looked like, but I knew it was her by her
     perfume and her voice. I started at a new school just after
     Christmas in fourth grade. I started to learn how to read and
     write. I also started to be taken to the doctor’s, I even had
     my first pair of glasses, and they were sparkly pink.
     At this point in my life, my father stepped in. He had fixed his
     act and was no longer a drunk. He was still a deadbeat, but not a
     drunk. My dad asked me if I wanted to go on weekend visits to his
     place now that I was living with my grandma. I went a few times,
     met my stepmother, and she was very nice.

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     She had another kid who was younger than me. He was my
     stepbrother, now. My stepmother and my dad had their first baby
     together, and I now have two half bothers.
     The new baby was fine until he turned one. Then he had a seizure
     after eating turkey for Christmas dinner. My dad and stepmother
     rushed him to the hospital, and the doctors there did a ton of
     tests, including a FISH genetic test. The test results came back
     and the doctors told my stepmom and dad that the baby had
     DiGeorge Syndrome and that it was so rare the doctors couldn’t
     find any research on it, other than from 1984, the year after I
     was born.
     They started to treat my baby brother for hypocalcaemia and low
     iron; He needed meds to make sure he didn’t seize up. Even so,
     he still had seizures from time to time. My stepmother and dad
     decided to have another child. Knowing my brother had DiGeorge
     they got my sister tested at birth. She was also put on treatment
     for hypocalcaemia. Every day both kids took their meds, but
     something was wrong with them growing up. They had trouble
     learning. They had trouble listening. They had trouble potty
     training.
     My dad and stepmom had more doctor visits and testing done. They
     decided to have themselves tested as well. My stepmother’s FISH
     test came back normal, but turned out that my father has
     DiGeorge.
     My father never really looked into how to get treatment for
     himself or how DiGeorge affected him. He was fine and didn’t
     show any symptoms other than the facial features and the hearing
     loss. At this time I was bouncing back-and-forth between living
     with them or with my grandma. I decided at fourteen to give
     moving in with my dad and step-mom a try. I turned into the maid,
     the cook, and everything else my dad and stepmom were too lazy to
     do. The only thing my dad did was get a restraining order on my
     mother after she and her mother visited me at school one time.
     I moved back in with my grandma around age fifteen, and I went to
     a school I wanted to go to. I was tested to be in general or
     advanced classes, so in junior high I took general classes, but I
     was bored with those. In high school, I took mostly advanced
     classes except for math. I failed math class every year and only
     passed it in summer school.
     Summer school is where I met my first love. I went on my first
     date and had my first kiss. I was once again living at my
     father’s. I was sixteen now. The next day my stepmother
     over-dosed on Tylenol. I had to call 911 to get an ambulance to
     take her to the hospital so we could get her stomach pumped. She
     was dealing with depression because of the two kids having
     DiGeorge and my father having DiGeorge and not being able to get
     treatment of any kind because doctors didn’t know what to do.
     My stepmother was in and out of hospitals. To escape, I spent
     more and more time with my high school boyfriend. I started to
     focus more on my friends than on being a brainer at school. I
     started to skip class just so I could get away from the world. I
     decided to move back in with my grandmother for good because my
     grandpa had cancer. Moving back in with my grandma was the best
     choice I could have made. I was loved. I was cared for. I was
     protected from the outside world. I started a babysitting job. I
     also got my first real job at McDonald’s. Then I moved on to a
     job at a photo lab in a grocery store.
     I was going to school every other day as well as doing my co-op
     in a hair salon every other day to earn school credit hours. I
     learned all the ropes—how to shampoo and blow dry client’s
     hair, how to

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     sweep the floors, how to wash the windows. I learned how to
     answer the phones and how to dye client’s hair, I learned how
     to do nails and make-up, and I learned how to run the tanning
     bed. I learned the ins and outs of what was needed to run a
     salon.
     I learned how to do it all. I even learned how to do a basic
     trimming of hair. I got to play with a mannequin and did up-dos
     and perm rods and practiced highlighting with conditioner on the
     mannequin’s hair. That was my favorite part.
     I learned how to do the social interaction that earned more tips
     from customers. I liked that too. I learned how to sell hair
     products and do bookkeeping. Then I started to look for a job,
     because my co-op time was almost up. I was hired at a salon,
     where I was an assistant. I still kept my photo lab job. This was
     all while I was in high school, the two jobs plus babysitting. I
     was doing well in high school until I got to my twelfth grade. I
     failed one English class and didn’t get the credit because I
     was too busy having fun with my boyfriend. The biggest regret I
     have in my life is not finishing my high school diploma with just
     one credit short. I didn’t go back because I thought I was
     doing well with my jobs, and I needed the money to start living
     on my own.
     My boyfriend and I started to drift farther and farther apart. I
     started to chat with people online and found a guy who is now my
     husband. We have been together since February 23, 2005.
     When I was twenty-two, I went back to Toronto and got tested for
     DiGeorge after my stepmother pleaded with me to get tested. I
     tested positive. Around the same time I was tested my step mom
     gave birth to my baby brother who passed away at age six. He too
     tested positive for DiGeorge Syndrome
     I was twenty-four when I got married and got pregnant. I did have
     a complicated high-risk pregnancy. I always was sick during my
     pregnancy. I don’t think there was a day I didn’t throw up. I
     started to pass out, and they put me on bed rest. I refused an
     amino test as I knew I could have my kid and get a FISH test. I
     wasn’t planning on aborting my child, healthy or unhealthy.
     I had developed hypocalcaemia as my daughter was pulling the
     calcium from me. No matter how much calcium supplements I was
     given to take, or milk to drink, it wasn’t enough. My levels
     stayed at three during my pregnancy; my iron levels were also
     around six. I could not afford the medications to treat it, so
     bed rest it was. I had a lot of amniotic fluid. I started out
     being 135 pounds and my last weigh-in for pregnancy was 198
     pounds. I’m only five foot two inches tall. You can imagine the
     leg pains and the back pains I had. I gave birth to a beautiful
     seven pound, five ounce baby girl, Isabella. She started to turn
     blue and had tremors in the hospital. I urged the doctors to do a
     FISH test. They wanted to wait a week. I was against the waiting;
     I said it needs to be done now.
     They tested her and, sure enough, she has 22q deletion, too. She
     has a history of lower left blood pumping into her left chamber
     of her heart, but the heart issue resolved itself. She has had
     seizure like activities and a history of hypocalcaemia. We had
     feeding issues and ended up having to thicken formula with rice
     to the consistency of honey. We did a swallow study which
     revealed she had reflux, and I could not breast-feed her because
     she would puke it up through her nose. I did pump my milk into
     her formula to mix it with the formula and the rice to add more
     nutrients.

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     Isabella has had speech delays and didn’t start talking until
     she got her first set of ear tubes, and I thought, oh no history
     is repeating itself. She sounds hyper-nasal. She is currently
     involved in pre-school programs and is having some learning
     difficulties and some emotional outbursts. Speech pathology
     services are provided two times per week. I am a strong believer
     in practice makes perfect, so Isabella and I practice on her
     speech every day. Isabella has occasionally had blue lips and
     restless sleep patterns despite best efforts at a sleep routine
     and melatonin.
     Isabella’s hearing is within functional limits; she has been
     seen by a local doctor since she was two years old when they
     placed her first set of tubes in her ears.
     Isabella presents with Velocardiofacial Syndrome. Her symptoms
     are face, including small hooded eyes and small ears. She eats
     regular food and does not have nasal regurgitation. She’s
     growing normally although she has some learning difficulties.
     Bella has low muscle tone in her palate in her upper mouth so we
     have to go to a palate specialist. We also have her in speech
     therapy. Her articulation has improved and she also has had tubes
     in her ears. The doctor just put her on medicine for her
     allergies and that’s helped with the runny noses and the dark
     circles under her eyes are starting to fade.
     She will be happy one minute and in a tantrum that’s
     uncontrollable the next due to emotional and physical ADHD. We
     have just started her on meds.
     Testing of the newborn is not only important for the newborns but
     testing is also urged by me because of my story. Overall, you
     wouldn’t be able to tell there was anything wrong with Bella or
     myself in physical appearance. We also don’t sound like there
     is anything wrong with us either. I was one of the lucky ones who
     knew I had 22q deletion before I had my daughter Isabella. My
     father has 22q deletion. Three half siblings of mine have it. We
     have to get rid of the fear the unknown brings of a new diagnoses
     and start treatment as early as possible. We all want to be
     around for our kid’s graduations and other important life
     events. Why wouldn’t we want to be tested to get treated for
     symptoms that have or have not been around? Each and every one of
     us with 22q is very different.