On the 7th day of Christmas I'd like to introduce ...

the late Judith Scott

Although a sad story, I think this highlights how things have progressed for people with Down's Syndrome and as such I wanted to share it with you and thought it deserved a place here.  I also think that ultimately it had a happy ending which makes it worth reading.

Judith and twin sister Joyce were born on May 1st 1943 and for their first 7½ years they were virtually inseparable,  Then it was time for school and their parents were told that Judith was ineducable and recommended to place her in an institution.  Joyce awoke one morning to find the bed they shared was empty and the next time she saw Judith was in the institution.

At the institution following oral testing, Judith was assessed as having an IQ of only 30 and was therefore not offered any training.  Without Joyce, her childhood interpreter, she became severely alienated and developed behavioral issues but it was to be years before she was diagnosed as severely deaf explaining her communication problems.  Although the twins saw each other a few more times, eventually they lost contact.

In 1985, Joyce realised that by becoming her sisters legal guardian they could once again be close and after a struggle to locate her, Judith finally moved to California where she started going to the Creative Growth Art Center.  At first she was fairly uninterested in paint but a few months later she attended a fiber art class and suddenly a whole new world of expression opened up for Judith.  She was given complete freedom to choose her own materials and taking objects she would wrap them in carefully selected colored yarns to create diverse sculptures in many different shapes.  Many of her works also feature pairs indicating that her experience as a twin played an important part in her life.

Judith died peacefully in her sister’s arms at the age of 61, having outlived her life expectancy at birth by almost fifty years.  

Having already corresponded briefly with Joyce, I was excited to unexpectedly meet her at the World Congress in Dublin and to have the opportunity to view Outsider a film about Judith's life and work.  It was incredibly emotional to see her and Joyce together and the wonderful connection between them and wonderful to know that after the sadness of many years of separation that they were eventually reunited and shared quality time together.   You can read more of their incredible story and Judith's work here. 

On the 2nd day of Christmas I'd like to introduce ...

Claire and Nicola Mowberry 

Claire and Nicola were about 9 months old the first time I ever saw them.  It was at a Down's Heart Group conference and I remember them sitting in their car seats side by side at lunchtime, whilst Richard their dad fed them pieces of bread from his sandwich.  They reminded me of two little birds with their mouths open waiting for the next bite - little did anyone know at that time just what a wonderful memory of Claire that would prove to be.

Although I had heard of other twins in Down's Heart Group where both had Down's Syndrome, Claire and Nicola were the first where both twins had survived and I have to admit to having been fascinated by them from my first contact with the family.  Whilst both girls were born with heart defects, they were not the same.  Nicola had an Atrial Septal Defect (ASD) whilst Claire had Fallot's Tetralogy necessitating her to have her first surgery, a Blalock shunt at 4 months to enable her to live to have corrective surgery later.

At 15 months she had further surgery where they opened her chest and repaired the hole. but there were complications and her parents were told that she might not survive the next 12 hours.   During this time she was put on to ECMO and finally 5 days later she  started to pull through, but then on her first day home she was re-admitted and it was found her airway had reduced due to being ventilated for so long, so she was given a Tracheostomy.

I remember keeping track of Claire's progress through this and being very concerned, not only for her recovery but for her parents potentially having to go through it all again with Nicola.  Thankfully though, Nicola's hole eventually closed on it's own so that was one less worry, although the issue of Claire's Tracheostomy was to continue.  The surgery to reverse it is more complicated in a child and it was 5 years before a specialist from Switzerland saw Claire at Great Ormond Street Hospital and was prepared to remove it, although there were no guarantees what damage might have been done to her vocal chords or whether she would ever be able to eat normally.

At the Down's Heart Group conference in 2008, I was overjoyed to actually hear Claire's voice, quite quiet and husky, but none the less, her voice.  And then on Sunday morning at breakfast I had the pleasure of sharing a table with the family and not only witnessed Claire eating a small amount of food orally, but also interacting verbally with her twin and older sister.  It was a truly wonderful thing to see.

So what makes this family so extraordinary?  Well apart from the obvious fact that twins with Down's Syndrome are fairly unusual, it's the family that are amazing.  Many people find it hard to cope with having a child with Down's Syndrome and heart problems, others find it hard to cope with twins, but Richard and Shirley have taken it all in their stride and remained the most positive supportive couple I know.  Despite all the time taken up in medical appointments and all the other services the twins have required, they have managed to maintain a family life and the fact that the twins big sister Lauren is a wonderful, well adjusted young lady, confirms this.  I really feel incredibly privileged to know them and have them all as friends.

Dad Richard says:

My girls are now 15 years old and so much fun to be with. I do not believe we would have coped without the help from Down's Heart Group.