You should truly count yourself luck if you have food on the table, a roof over your head and that you are in good health. If you are in this position then you are blessed and should live your life to the fullest.
Throughout the world there are millions who would give their right arm to be in similar circumstances for just one day. Sadly, there are numerous people born with disabilities that make it impossible for them to do this.
Lucy Parke is one such individual.
The energetic, brave 8 year old passed away earlier this week, after suffering Hutchinson-Gilfords Syndrome, most commonly known as Progeria.
Little Lucy was diagnosed with her condition shortly after she was born 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-Gilford progeria syndrome (HGPS) is an extremely rare hereditary disease that affects the skin, musculoskeletal system, and vasculature. HGPS is characterized by signs of premature aging. It is an extremely aggressive disease.
HGPS causes sufferers to age at a rate 10 times faster than normal.
It is a very rare disease that affects roughly one newborn in every 8 million.
Children who are diagnosed with the genetic condition can very often look completely normal at birth. Most cases are diagnosed between the age of 18-24 months when their aging begins to accelerate.
Symptoms often 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
Little Lucy was laid to rest in a small patel pink casket, sporting a rainbow on the front. Her loving father was one of the people that carried her tiny 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.
Tributes flooded social media for the little girl who touched so many hearts throughout the world. 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. At the tender age of 4 months she had to endure a hip operation. She also suffered from problems in her knees and ankles.
Her parents became concerned with her lack of appetite and noticed she was gaining no weight. At 9 months of age, Lucy was diagnosed with Hutchinson-Gilfords Syndrome.
Despite her debilitating disease, she was a little girl who was full of life. She was like any other child and loved to sing and play with other children.
Heart problems and arthritis plagued her and prevented her from growing up alongside her classmates and friends.
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. Their goal 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 spent long hours attending hospital appointments, but apart from that she lived a relatively good life, up to the stage before her condition took a turn for the worse.
Her loving parents, David and Stephanie, were in constant contact with doctors from Progeria Research Foundation in the USA and France, to try and find out if there were any natural remedies to help prolong Lucy’s life.
Sadly, nothing could be done to help.
Stephanie and David endured every parent’s worst nightmare. But they refused to let the negatives 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 and prayers – nobody should have to go through this ordeal in life.
Lucy’s memory will always live on and bring continue to bring light to the world.
Please SHARE Lucy’s touching story with family and friends and honor this beautiful little angel who had such a strong heart. May she rest in peace!