DISTRICT HEIGHTS – When a little girl’s birthday approaches, she normally begs her parents for an expensive doll, an extravagant birthday party, or a pony or unicorn. However London Nickols had other plans in mind for her special day. London, who has battled sickle beta thalassemia since she was born, told her parents for her […]
DISTRICT HEIGHTS – When a little girl’s birthday approaches, she normally begs her parents for an expensive doll, an extravagant birthday party, or a pony or unicorn.
However London Nickols had other plans in mind for her special day.
London, who has battled sickle beta thalassemia since she was born, told her parents for her eighth birthday she wanted to raise funds for sickle cell and bring awareness to those who are struggling with the disease.
London’s family, friends and other supporters loved her idea and planned a walk on Oct. 17 at Walker Mill Regional Park to raise money for the Howard University Sickle Cell Center in her honor. The walk began at 10 a.m. and guests were greeted with food, games and fun. The event was a celebration of London’s strength and willingness to help others.
Those who were not able to attend “London’s Bridge Walk” still donated to her GoFundMe fundraiser online. The family hopeD to raise $8,000 for every year of London’s life. So far they have raised $3,000 online.
“I was excited about this event because I’m raising money for kids who have sickle cell. My aunt Nene had sickle cell and she died from it,” London said.
London showed up to the surprise event excited to walk and was given a portable loudspeaker to chant, “We’re going to fight sickle cell.” She said it has been a hard journey, but has a passion for helping others who are fighting this disease like she is.
Some of her friends and family members currently struggle with the disease as well and she helps encourage them to enjoy life and become an advocate for a sickle cell cure.
London’s parents describe her as “very outgoing, having a mind of her own and a diva” but most of all they love her unique personality.
Angela Nivens, London’s mom, had lots of help from family and friends in order to plan the sickle cell walk and fundraiser, especially from London’s aunt and uncle, Sean and Patrice Nickols, who coordinated the walk and created the GoFundMe fundraiser page online.
“Although London has endured this painful disease her entire life, she has a giving heart and beautiful smile,” Sean said. “Even at the age of eight, it is amazing she thought to give back and bring awareness to the disease that affects millions of people. It was very important for me as her uncle to assist in any kind of way.”
Patrice echoes Sean’s sentiments.
“To know London is to really know London. She is a very energetic, smart and sassy 8-year-old,” Patrice said. “Her character alone, she just has a bright spirit. It was a no-brainer when London asked for this on her birthday. With us donating the money raised to Howard University, I know this will bring more awareness to everyone.”
In the United States about 1,000 babies are born with sickle cell disease each year. Approximately 70,000-100,000 individuals in the U.S. have sickle cell disease and 3 million have the sickle cell trait.
According to the American Society of Hematology, sickle cell and thalassemia are genetic disorders caused by errors in the genes for hemoglobin, a substance composed of a protein or “globin” plus an iron molecule that is responsible for carrying oxygen within the red blood cell.
The disorder can cause fatigue and episodes of pain ranging from mild to very severe. It is usually inherited by both parents who pass on an abnormal gene in order for a child to have the disease. When this happens, the resulting diseases are serious and, at times, fatal.
Nivens said London has experienced only three sickle cell crises over the years, each occurring at random moments. At one point London caught Pneumonia and was hospitalized for three days.
“One of the things doctors tell us to do is when she is experiencing pain to give her medicine and look out for her fever,” Nivens said. “I had never seen my daughter under the weather like that so it really hit close to home. In those situations I stay calm and I don’t mind asking for help from my family. There are a few people in the family who have it as well like my great aunt who passed from complications with the disease.”
Nivens was unaware she had the thalassemia trait and did not find out until she was already pregnant with London. She recommends that everyone go get tested to see if the disease is in their family genes.
“I had no clue that I had the thalassemia trait. I knew that London’s dad had the sickle cell trait,” Nivens said. “I didn’t know my son had the thalassemia trait until recently. I had to explain to him how to be careful as he gets older and finds a mate.”
Sohail Rana, M.D. is a Howard University Hospital pediatrician and hematologist who work closely with patients who have sickle cell disease. He has been studying medicine for 35 years and spoke during the program held after London’s walk for sickle cell. Within his first year of practicing medicine, Rana had his first child with sickle cell come into the hospital with a fever and despite the provided care, died at 20 months old. He is glad that London chose to bring awareness to this disease at such a young age.
“From that time on we have come a long way. I counsel parents of children whose child has been born with sickle cell disease and many of them now are making it through to twenty years of age and over,” Rana said.
London had her own advice for others dealing with the disease.
“When the sickle cell is coming just relax, drink some tea and soup,” London said. “It will warm you up. Also, do not go outside to play on the same day that you have a sickle cell reaction.”