Madeline (Maddie) Hubert

Born:  October 25, 1996

My daughter, Maddie was born full term, weighing 9.2 lbs.  My husband and I were as prepared as you can be for her special needs, since I agreed to have an amniocentesis when I was 24 weeks pregnant, due to ultrasound abnormalities seen in her brain.  The amnio results came back Down Syndrome, but our geneticist disagreed with the findings, even though he could not say exactly what she had, but that it affected every cell tested.  We were told after her birth Chromosome 12 can look like 21 under a microscope.  This was my first child and I was determined that we would get through this and praying was all I could do.  God got me through it and I could not have done it without Him.

When Maddie was born she had the typical PKS features, sparse scalp hair, high forehead, high arched palate, broad nasal bridge and low muscle tone.   Our geneticist and neonatologist spent the night at the hospital trying to determine her abnormality.    They knew it was not Down Syndrome and diagnosed it as Pallister Killian Syndrome before it was confirmed by the blood test the following day.  It disappeared in her blood within 48 hours, which we were told is normal.   They were not sure she would survive the first night.  There were problems with her blood count and she could not keep the milk down the first day or two, but once my breast milk came in and we were able to hold her, she did fine.   Our doctors were wonderful and very supportive at such a difficult time.  Right before we left the hospital, Maddie’s neonatologist told me something I’ll always remember . . .  “so many people think that the most important thing they can give their children is to send them to the best schools and to be the smartest in their class, but, what we really should be giving them or teaching them is how to be kind and loving . . . we need more nice people in the world!”.  He was so right.  By the grace of God, we were able to take her home when she was one week old.  It was a very happy day.

Within the first month, Children Services were calling and I had to learn what therapy was, choose therapists, agencies, case workers, etc.  It was somewhat overwhelming, but you do what you have to do to take care of your child.  Maddie had very low muscle tone, so we started Occupational Therapy and Physical Therapy by the time she was 2 months old.  When Maddie was six months old we could see she was not going to sit up anytime soon.  I wondered if she would ever sit up or even walk.  It was very difficult to think about the future, so I concentrated on the now and prayed.

When Maddie was 3 years old she had 4 surgeries:  eye surgery to correct a lazy eye condition, ear tubes to prevent recurrent ear infections, the Ladd’s procedure to correct a malrotation of the small intestine, and finally, a Nissen Fundoplication to correct severe reflux.  All surgeries went fine.  She has had no other major surgeries since then, thank God.  She had Myoclonic Jerk type seizures in the past and now has developed Tonic Clonic type seizures which have not caused any severe problems, but is on a seizure medicine to be sure.   She does have some conductive hearing loss, but does not need hearing aides and her eyesight is essentially normal, but has a processing disorder.

Maddie is now 7 years old and we are still working on sitting up.  (I like to say it that way).  She has been in a pediatric wheelchair for about 2 years.  She communicates with sounds, crying, moving her hands up to her face, smiling and occasionally she will look directly at you.  She kicks her legs up and down a lot, especially when she likes something.  She also pats her right hand down on her tray when she wants more food or an activity.  She loves music (it’s her favorite), books, art activities, swimming and a good massage.  And when she gives you one of her big smiles and laughs, it makes you forget all your troubles.  More than anything else, she knows one very important thing . . . LOVE.  She can see it, feel it, hear it and smell it.  She definitely knows love.

Maddie attends a school which is 10 minutes from our home and is loved there very much.  She receives Occupational, Physical and Speech Therapies at school.  There are inclusion classes she is in where the regular education students come to her classroom or she meets with them in art class or something similar.  We believe the inclusion process is important for our children and for the regular education students as well.   They learn that special needs children are more like other children than not like other children.  They learn so much from each other.

We are also involved with a group of parents of special needs children in our area to raise funds to build a playground (www.boundlessplaygrounds.org) that would have 70% accessibility for all types of special needs children.  Our website is:  www.kidz.la.  We started this project in the Spring of 2004 and hope to have it built within a year or two. 

Maddie has 2 sisters who love her very much, Katie who is 14 years old and my husband and I were blessed with our second daughter, Emma, in October 2001, now almost 3 years old.   We were so excited to have a second child and it has been a wonderful thing for Maddie too.  She loves all the attention she gets from her sisters.  Katie and I once did a video of Maddie, “A day in the life of Maddie” for her class at school and Katie was so proud of her sister.  Emma just loves playing around Maddie’s wheelchair and thinks her sister is the coolest.   She refers to her as “my Maddie Pattie”.

We are also very excited about our church and the Special Needs Ministry that started there recently, called “Hands in Hand”.  There Maddie attends an inclusion classroom called “Kids Praise”, which has music, puppets and lights galore.  She loves it!  Our church believes that children with special needs should feel as comfortable and accepted as all children do.

Our life changed when Maddie was born.  As a parent, you do not wish for a child with special needs, but when you are chosen to be a parent of one, you have to step up to the plate and be an advocate for your child.  I am proud to say I AM a parent of a special needs child.  I am glad now that God chose me.  We have met so many wonderful families throughout the years and to witness the love these children give is truly awesome.  Maddie has taught us many things we would have never learned otherwise.  It opens up your heart to a whole different world.

Julie & Steve Hubert (proud parents to Maddie)