If you have food on the table, a roof over your head and you’re in good health, then you are truly lucky and should enjoy life to the fullest.
There are millions of people out there who would give anything to be able to live their lives to the full just for one day. Sadly many people are born with disabilities that make it impossible for them to do that.
Lucy Parke is one of them.
The energetic, brave 8 year old passed away earlier this week, after suffering Hutchinson-Gilfords Syndrome, most commonly known as Progeria.
The little girl was diagnosed shortly after her birth in 2009.
Lucy Parke died surrounded by her family in her home in Northern Ireland on New Year’s Day, reports The Daily Mail.
Her parents, Stephanie and David, were completely crushed.
“We have lost our precious Lucy. Her body was weak but her heart was strong. Her love for life and wonderful smile made us proud to be her parents,” the family told Belfast Live.
Hutchinson-Gilfords Syndrome, generally known as Progeria, is a rare condition that affects children and is extremely aggressive.
Progeria causes sufferers to age around 10 times faster than normal.
The disease is extremely rare and affects roughly one newborn in 8 million.
Children who have the genetic condition often look completely normal at birth. It isn’t until around 18-24 months that their aging accelerates
Other symptoms include burning body fat unusually quickly, hair loss, and slow, inhibited growth. The average life expectancy for sufferers is around 13 years.
A life worth remembering
Lucy was buried in a small pastel pink casket, with a rainbow on the front. Her father was one of the people to carry her casket.
Her parents are now encouraging people who want to show their support to donate to Northern Ireland’s Children Hospice and other local organisations. These organisations were the ones there to help Lucy during her short life.
Social media is now flooded with tributes to the little girl who touched so many people. She has been well-known in Northern Ireland for many years.
Catherine Campbell, who’s writing a book about Lucy, has interviewed her mom Stephanie.
“She was beautiful in every way, but had the premature aging condition Progeria, and fought bravely against the effects it had on her tiny body these past eight years,” Catherine says.
The author continues:
“Lucy is now free from pain and limitation, but please pray for her wonderful family who are devastated by her passing. I am so blessed to have met this amazing little girl, and feel Stephanie and David’s pain very keenly today.”
Lucy was born on November 10th 2009. When she was 4 months old she was forced to endure a hip operation. She also experienced problems with her knees and ankles.
She ate next to nothing and didn’t gain weight. When she was 9 months old, Lucy was diagnosed with Hutchinson-Gilfords Syndrome.
Despite her serious illness, she was a girl who was full of life. In many ways she was just like any other child – Lucy loved to sing and play with other children.
But unlike her friends, she suffered with arthritis and heart problems, which prevented her from growing up alongside her classmates.
Stephanie Parke, Lucy’s mom, tried to help her daughter meet other children with the disease.
“We have been to two reunions in England, October 2011, and Italy, December 2012, with the European Family Circle and we are going to one in England in August for six days. It’s a good opportunity for Lucy to meet other children like her and have the same limitations. She is very shy but when she gets to play with other children she comes out of herself,” Stephanie told Down Recorder.
The family also founded the Lucy Parke Progeria Fund shortly after Lucy was diagnosed in 2010. The aim was to raise funds for Lucy’s medical treatment.
“We are very grateful to everyone who has helped her financially and in prayer over the years. At the minute there is no type of treatment, but the Progeria Foundation are trying to find a cure. Because there are so few children in the world there is limited research able to be done,” Stephanie explains.
Lucy went to regular hospital appointments, but still lived a relatively good life, before her condition suddenly worsened.
David and Stephanie were in touch with doctors from Progeria Research Foundation in the USA and France, to try and find out if there were any natural remedies to help Lucy live a longer life.
But sadly, nothing helped.
Stephanie and David endured every parent’s worst nightmare. But they refuse to let the negative overshadow all the joy that Lucy brought to the world.
“Lucy was sent to us for a reason and we thank God for her daily. She has enlightened our family and we have grown closer to God and stronger in our faith because of her. She has changed our lives and will continue to impact the lives of so many others in Northern Ireland and throughout the world,” Stephanie says.
We have Lucy and her family in our thoughts – nobody should have to go through this.
Now we hope that the brave little girl’s memory will live on and continue to bring light to the world.
Please share Lucy’s story, to help honor a beautiful girl with a strong heart. RIP angel ❤️
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