GOSH patient Amy gives parents the best Christmas present ever

Christmas has an extra special meaning for the family of Great Ormond Street Hospital (GOSH) patient Amy, after she took her very first steps, against all the odds, on Christmas day.

Amy was just the fifth* baby in the world to show signs of a rare neurological disorder at birth called chronic inflammatory demyelinating polyneuropathy (CIDP). It more commonly affects young adults.

Amy’s parents Samantha and her husband Darren feared Amy may not survive, and that if she did, she may never walk.  Four years later, her family faced the shocking news that their second daughter Mia, had also been born showing signs of the condition. It was unheard of for two siblings to be affected from birth before this.

This year to help mark such a poignant and special time for the family, Samantha and Darren are sharing their family’s story in support of Great Ormond Street Hospital Children’s Charity’s Christmas Stocking Appeal, which raises vital funds to support the most urgent needs of the hospital.

When Amy was born she couldn’t move anything apart from her eyes. She was taken straight to an incubator in the special care baby unit and kept in isolation for 24 hours while her parents awaited test results. Amy was then transferred to GOSH to receive specialist care and treatment.

Amy’s mum Samantha says: “I’d heard of GOSH as somewhere where the most seriously ill children go and you never imagine you own child will have to go there. When we walked into the reception I was filled with anxiety, but I quickly discovered that the care at GOSH is phenomenal, and realised we were in the best place possible for Amy.”

Amy responded well to treatment at GOSH, and her parents finally saw her move for the first time aged six weeks old during a physiotherapy session at home. Her progression continued with her treatment, and she took her first steps on Christmas Day 2012, aged 15 months old. Amy’s sister Mia is responding well to treatment too.

Samantha continues: “Without the knowledge and expertise of the doctors at GOSH, we might have lost Amy. I can’t thank them enough for what they have done for both our daughters, and for keeping our little family together. We will be forever thankful to them and that’s why we were so pleased to be able to support GOSH Charity’s Christmas Stocking Appeal this year.”

GOSH Charity’s Christmas Stocking Appeal encourages the public to make a donation and write a message of hope and support for the children and young people cared for at Great Ormond Street Hospital over Christmas. The messages are displayed on paper stockings that decorate the wards, and in a digital display at the hospital for patients, family members and staff to read.

The money raised by the Stocking Appeal will go towards the hospital’s most urgent needs, from pioneering research, state-of-the-art medical equipment and the rebuilding and refurbishing of the hospital to support services for families and patients including parent accommodation so mums and dads can stay close by when their children are in hospital.

For more information please contact:

Melissa Shelley, GOSH Charity press office

Melissa.shelley@gosh.org / 0203 841 3185

*Prior to Amy’s birth, four children were subject to the only four research papers published about children presenting at birth with chronic inflammatory demyelinating polyneuropathy (CIDP).

About CIDP:

• CIDP is caused by damage to the myelin sheath (which wraps around nerves to protect them).
• As a result, the nerves are damaged and this causes weakness and paralysis.
• The condition is rare, and is more usually found in young adults.
• Symptoms include tingling or numbness and weakness.