Samantha's Legacy Of Hope

Our daughter Samantha was born in 1993 with a rare genetic condition called Tetrasomy 18p Syndrome. Autism and absence seizures are often a manifestation of the genetic disorder as was the case with Samantha. Unexpected, Samantha suffered sudden cardiac arrest at 13-1/2 years and died. NO ONE with the Syndrome, but our little girl has succumbed due to the disorder!

At the time of our daughter's birth, poor prognosis for development, led the University Genetics Clinic to benignly enlist Social Services' help to locate supports for us as a newly diagnosed, frightened and grieving family. However, that was not what transpired: Instead, we were advised that the sole way to achieve necessary funding for medial therapies and services would be if Samantha lived in an out of home medical placement. Natural families, the Ministry Representative stated, could not receive access to similar support as foster placements. We were informed that if we wished to offer our child a chance at life, this was the "kindest thing to do". Reeling from prognosis that our daughter would likely not walk, talk, see, nor comprehend that we were her family (the hated phrase utilized to describe lack of development was "imbecile"), we were terrified and naively succumbed to "expert opinion."

In a nutshell, optimum care was not afforded our daughter. In fact, grave issues surfaced and although we repeatedly brought concerns forward to our caseworker, these were belittled or ignored. Years went by as we tried to learn our rights and responsibilities as parents... No one would tell us the truth: Throughout all of the years, the foster mother and caseworker indicated that there was a guardianship split from which the Ministry had the final say. In fact, the placement had never achieved legal authority, we, Samantha’s natural family were legal guardians of our child. Yet, until our daughter lay in hospital dying, the information was not revealed to us. We had entered into an "Agreement" with Ministry shortly following Samantha’s birth and unlike an "Order", our arrangement was at no time ever an intervention issue. Rather, as advised, strictly a means to achieve medical supports. Yet, we were distanced from our child and all parental rights erroneously transferred to the placement. The caseworker informed that she had difficulty locating “placements for children less disabled than Samantha” and advised us to refrain from upsetting the foster mother. We later learned that we were "1 of 4 families in the Province” who existed under the archaic Agreement.

Following the death of our daughter and the revelation that we were entitled to obtain information, I began to seek medical and educational records. I learned most heart-breaking renditions of truth: For instance, a Principal and Rehabilitation Aide at Samantha's school witnessed the foster mother take hold of my little girl and shake her. The reason? Samantha had been sick, vomiting all day and a decision was made by school authorities that she could not safely return to the placement; that Samantha would need to be retrieved. The foster mother, they wrote, was so angry, denying illness, that she took Samantha and yelled, "STOP IT" as she shook her when she began to vomit.

I discovered from past medical records MORE sinister health concerns had repeatedly emerged... Our little girl was first recognized having absence seizures by an RN on her 3rd birthday. Throughout the years, other specialists witnessed similar signs and recommended follow-up assessment for treatment. The foster mother, however, opted not seek medical intervention nor inform us, the natural family and legal guardians – which, the caseworker was aware. At one point, I had even asked the foster mother outright whether there was a possibility of seizures because statistical research indicated that 25% of individuals with the Syndrome have a disorder. I requested that the information be shared with the paediatrician viewing Samantha, but he was never told.

Twelve years after Samantha's birth, at last, the Office of the Child Advocate in Alberta became involved. I credit Samantha's escape from foster-care to this Agency AND the fact that her file was removed from the Office of Child & Youth Services in Morinville - which had been over-seeing decisions for nearly her entire life - to a new Region 6 Authority. Samantha came home and immediately flourished! She gained 10 pounds; which was 20% of her body mass. Having been merely 50 pounds throughout the ages of 11-13 in foster care, Samantha effortlessly gained weight at home. Within the summer months, I taught Samantha to toilet and she achieved continence during daytime hours; so proud of herself having finally experienced wearing "big girl" panties for the first time in her life. Language also began to emerge... Samantha started verbalizing words; with the efforts of her brothers' each day, began to accurately say their names! Thirteen years of being non-verbal and suddenly Samantha was able to talk with very close approximations of phrases. She would greet her bus driver happily, “Good-morning!” The strides in all areas of development was extraordinary. The manager with Social Services remarked that Samantha's development had obviously been “severely repressed.” Teachers referred to Samantha as "A butterfly who emerged from her cocoon."

Now viewing Samantha on a daily basis, we ourselves, suspected the presence of seizure activity - confirmed by educators - so pursued testing with neurology (EEG.) Our paediatrician witnessed Samantha have an episode in the office during a well-check as we discussed possibility! A second evaluation was to take place and treatment was to begin, however, within days of that office visit, our daughter suddenly took ill at school. Samantha rested during the day and I watched over her closely. The second medical evaluation was scheduled for the next day. I spoke with the hospital's nurse and she advised we continue to monitor Samantha until the following day when the anaesthesiologist would decide whether or not to proceed with sedation. In the early evening, our daughter did not respond to her name so we rushed to emergency where it was determined that she was in cardiac arrest at the hospital. In hindsight, I don't believe Samantha was merely resting, but was actually exhausted from having repeated seizures during sleep which caused the heart to stop functioning.

The life and circumstances surrounding Samantha Lauren Martin caused me to challenge archaic laws inhibiting the rights of persons with disability & their families. Samantha passed on December 3rd 2006. Amendment to the Family Supports for Children with Disabilities (FSCD) legislation was effected retroactive to December 2006; FSCD informed establishment was a direct result of Samantha’s existence.

http://www.child.alberta.ca/home/527.cfm

Section 2-3, Manual Amendments: Policy and Procedures in Family Centred Supports and Services:

"The Family Support for Children with Disabilities Program to have separate legislation from that of child protection services." (Samantha's Law)

Amendment, which, I am currently petitioning the Court to recommend for National benefit of all Canadians and to be formally referred to as Samantha’s Law in tribute to the child, from which Legislation evolved:

http://www.petitiononlinecanada.com/petition/samanthas-law/67

While I appreciate that the Ministry refers to our history as "a learning experience" for them, for us, the absence of our child/sister will forever hold an empty space in our hearts and lives that we must constantly strive to survive. The sole consolation that we may take is the hope that archaic perspective towards individuals with disability may begin to change and with "Samantha's Law" other loving families, their children and constitutional rights will better protected in the future.

Society appears to be more accepting of diversity, however, Legislation to protect fundamental human rights of individuals with disability largely lags behind. And, law tends to fail our most vulnerable because of lack of enforcement. We must strive to alter the past so that the future holds better promise of constitutional adherence to law. Enforcement must not only be for the general public, but also include members of Government Authority who breach Legislation. Often, where Law is non-existent, the Courts do have the ability to establish decisions based upon precedence set in neighbouring jurisdictions... This is our greatest hope for all: Recognition that our daughter's life held significance as she continues to live on by aiding others in need.

This is our story, Samantha's far too short life and death... My baby girl, loved so much that we let go and will always have to live with the cost of trust. While I cannot go back in time to change my family's outcome, I can strive to help others in similar dire need by establishing Family-Centred Care Practice to protect human rights. That is Samantha's legacy of hope.

Yours Sincerely,
Velvet Martin