Couple’s heartbreak after losing their five-month-old baby to rare medical condition

A London couple have told of their heartbreak after losing their five-month-old baby to an extremely rare medical condition.

Zakia and Thorsten Klein, from Notting Hill, lost their first child Amelia, who was suffering from a rare medical condition called Edwards’ Syndrome.

She died in her heartbroken parents’ arms just over a month ago on July 14.

Edwards’ Syndrome is a very rare condition caused by an abnormal amount of chromosomes in the cells of the body. Babies born with the condition only survive a few days, weeks or months.

One in every 6,000 babies is born with the condition, the cause of which is not known.

Paying tribute to their daughter, the couple said: “Our little angel stayed with us for five months filled with joy, lots of smiles and unconditional love.

“We miss her dearly but feel very blessed for the time we had with Amelia and are grateful that she is not in pain anymore. “

New-borns with Edwards’ Syndrome have a low birth weight and their hearts and kidneys do not develop properly. They struggle with feeding and breathing and have severe learning difficulties.

Mrs Klein, 30, a primary school teacher, and her 40-year-old husband, who works in the global HR team at eBay, have now launched a fundraising appeal to raise £100,000 to help 99 orphaned children across the globe.

The couple said they hoped the project would “let Amelia’s light shine on in this world.”

Mr Klein said: “We hope that time will bring us some relief. My wife and I made a very conscious choice; with grief you can either shrink or expand. We really intend to do something good in the world.”

Edwards' Syndrome

Each cell in the body normally contains 23 pairs of chromosomes, which carry the genes a baby inherits from their parents.

But a baby with Edwards’ Syndrome has three copies of chromosome number 18, instead of two. This disrupts the baby’s normal development.

“Our intention is to give 99 young orphans in disadvantaged countries, love, joy, hope, as well as a home and future,” the couple said.

They will be working with established charities the Penny Appeal and SOS Children’s Villages.

They added: “Our intention is to support our little ones from the time they find us into adulthood and provide them with the means to live a happy and healthy life in dignity to grow into the best they can be.”

The couple, who have so far raised almost £4,000, hope to eventually convert their project into a fully-fledged charity depending on the amount of donations they receive.

They aim to at least match the £70,000 they had raised for Amelia’s medical treatment before her death, which they have already placed in the trust and raise £100,000 to cover the first years of the orphans’ lives including clothing, food, education, healthcare, home and a foster parent.

The couple are raising donations under the Amelia Klein Charitable Trust, governed by the Charities Aid Foundation and through JustGiving.com.

To donate and find out more visit https://www.justgiving.com/crowdfunding/amelia-klein