Nicholas Hinkins is five years old. Nicholas is a very loving, articulate, compassionate child. He loves to give hugs and kisses to everyone. He enjoys playing with the iPad, assembling puzzles, and having stories read to him. Nicholas has a twin brother, Christopher, whom he loves and adores with all his heart. They are the best of friends. They try to do everything together - but they can't, because Nicholas is so ill.
Nicholas has struggled with Sickle Cell Anemia, a hereditary blood disorder disproportionately suffered by African Americans, since he was born in Anchorage, Alaska. Nicholas was hospitalized in the intensive care unit the very first week of his short life. "Please help me live life. I would like to live life like my big brother. He runs and plays and goes swimming. I want to do all of those things one day," Nicholas pleads.
Chris, Nick's big brother says, " I love my little brother. I want to save his life."
Nicholas has been admitted to the hospital many times, staying there for week-long stretches, to have blood drawn, blood infused, and IV's placed in his little arms and hands, all while enduring the extreme pain caused by this terrible, debilitating disease. To control his extreme pain, morphine and other strong narcotic pain medicines are administered to Nicholas. Each time his recovery is a temporary one, until the next Sickle Cell crisis. The quality of life for a child with sickle cell is hardly bearable in Alaska. Nicholas isn't allowed to go outside and play like the other children. Nicholas spends the majority of his time inside the house to minimize his exposure to the frigid temperatures. He is often too weak to engage in the vigorous play and exploring outdoors that his siblings and friends enjoy.
Courtney, Nicholas's father, has moved to Georgia twice in an effort to combat Nicholas's illness. Unfortunately, due to the tough job market and economy, Courtney has had to return to Alaska, Nicholas' birthplace, to make a living and support his family. But the medical care and facilities Nicholas needs are out-of-state. Since Alaska is so sparsely populated, many residents with serious diseases or complications must travel out of state for proper care and maintenance.
Nick receives his care from the Pediatric Sub Specialty Clinic at Providence Hospital. The staff there are great. Nick's hematology nurse Erin had this to say about Nick and his disease."Our patient Nicholas Hinkns is a 5 year old boy diagnosed with Sickle Cell Disease. Sickle Cell Disease is a genetic disorder which causes red blood cells to change from their usual biconcave disc shape to a sickle cell shape during deoxygenation. Sickle Cell Disease is a lifelong illness in which acute and chronic tissue injury can occur when blood flow through the vessels is obstructed by abnormally sickle shaped red cells. While Sickle Cell Disease is managed with medication, the only available cure is a bone marrow transplant. Nicholas will undergo a Bone Marrow Transplant this summer at Children's at Egleston in Georgia. But he and his family cannot do this without help.
"My son has struggled with this disease since birth. He is so strong, and I'm proud of his courage to fight everyday to survive," explains Michelle Hinkins, Nicholas' determined mom. "Let's see how much we can raise to support my little boy."
Living in Alaska, Nicholas can only get help to manage the frequent pain crises he experiences. He was recently hospitalized with pneumonia and Acute Chest Syndrome - which almost killed him. The little boy was struggling to breathe and wasn't able to absorb enough oxygen to survive. Luckily, a hemoglobin specialist was called to fly in from Ohio to take care of Nicholas.
The Children's Hospital in Atlanta tested Christopher, Nicholas's twin, and determined that Christopher is a 100% match bone marrow donor for Nicholas. This gives Nicholas the opportunity to have a bone marrow transplant with optimal results with the possibility of saving his life.
According to the National Heart, Lung and Blood Institute, "Sickle cell anemia has no widely available cure. However, treatments to improve the anemia and lower complications can help with the symptoms and complications of the disease in both children and adults. Blood and marrow stem cell transplants may offer a cure for a small number of people."
What is life like when you suffer from Sickle Cell?
Nicholas has gained only one pound in the last year.
At 5 years old, Nicholas weighs only 30 lbs. The doctors are concerned about his growth.
Nicholas isn't growing because his body is trying to survive and heal.
Nicholas has been diagnosed with the most aggressive sickle cell disease. He has the "ss trait" which means his body produces approximately 90 percent sickle cells, which live only 10-20 days. His body has to constantly keep making new cells as the other ones die off so quickly.
In a normal person, blood cells last up to 120 days. This is why Nicholas's body hasn't grown significantly in the last year.
Nicholas has had numerous blood transfusions since his body is not able to make enough blood to survive.
Sickle Cell Anemia is a formidable disease but, as revealed by Dr. George McDonald, of the Fred Hutchinson Cancer and Research Center in Seattle, WA, "our future goals are to eliminate all of the complications of transplantation and to prevent relapse of malignant diseases. We have made substantial strides over the 40-plus years since the inception of the procedure and look forward to continued improvements."
Nicholas' doctors at the Children's Hospital of Atlanta have estimated that Michelle and her family will need to stay in Atlanta for a whole year to have the complete process - including preparation, transplant, recovery, and rehabilitation - completed. Nicholas, his brother Christopher, and their mother Michelle must relocate to Atlanta for a year. Michelle will need to take unpaid leave from her job to care for both her sons.
Since the family lives so far away, they won't be able to travel back and forth easily to the various doctors for appointments. Traveling on planes stresses out sickle cell patients, so traveling by air isn't the best option.
Nicholas and his family are desperately in need of donations to heal his disease. The contributions sent will ensure that: Nicholas gets the ongoing care he needs; his donor brother Christopher will be there to save his life with a transplant; and that their caring mother Michelle will be there to comfort and nurture them both. Contributions would enable the family to travel safely to Atlanta, secure lodging close to the hospital, and access to the medical care Nicholas so desperately needs. Nicholas' four older siblings will remain in Alaska with their extended family, and wait for the return of their youngest siblings, hopefully in good health.
Everyday Nicholas spends in Alaska is another day that delays his chance to be cured from Sickle Cell Anemia. Please help support Nicholas in his fight. Visit http://healnickhinkins.com to learn more about Nicholas and donate to save his life.
Sickle cell disease affects 80,000 to 100,000 people in the United States, the majority of whom are African Americans. For decades, the NHLBI has been at the forefront of sickle cell disease research, treatment, and education. The results of NHLBI-supported research have led to new and improved methods of treatment that have not only extended the lives of individuals with sickle cell disease, but also improved the quality of their lives.