William D Grafton Jr Myelofibrosis Fund

Welcome

Thank you for visiting the WDG Jr Myelofibrosis website. Our intentions in setting up and maintaining this website are three fold. First; we would like to honor and remember our father who lived a wonderful life for seventy years. Second; we have developed this site for families who are living with Myelofibrosis and are seeking information, chat forums and event listings and a better understanding of the illness. Lastly; we have designed a safe and easy method for visitors to make donations to help fight this disease.

Our Mission

As mentioned above; our mission is to bring attention to this disease, provide a place for families to learn more and communicate with one another and to help bring an end to Myelofibrosis. A victory in this battle could lead to saving lives on other fronts; Leukemia for one. Once again your patronage is encouraged and appreciated. Thank you kindly and God Bless all those that are fighting.

The Life of William D Grafton Jr

There is no way to talk about Bill without a smile on one’s face. Bill was an original in everything he did. Family and friends knew him as a true “wordsmith”, making everyday conversation a treat and a journey into the imagination. Everything seemed special and nothing was “run of the mill”. He was born an optimist and his eyes were filled with hope, ideas and possibilities. When adversity reared its head, Bill was not concerned. He knew that all things would work themselves out as God intended. He accepted adversity and he viewed it as an opportunity to learn, to discover and to make right any mishap.

Growing up in Southern California, Bill developed a love of the ocean. In his teenage years Bill would find himself making the trek from California to the Hawaiian Islands. There he would spend his summers in the water perfecting his body surfing style. He loved all things coastal and the islands strengthened his fondness of the water.

Once introduced to boating, Bill became an avid sailor. Bill’s wife Anne taught him of life aboard. Always the quick study, Bill became an able seaman with a remarkable knowledge of vessels stem to stern. His love of the sea and his travels in life led him from West Coast to East Coast.

In the East, Bill discovered more coastal treasures and he grew a special affinity for the waters of Cape Cod and Maine. Later in life Bill would discover the waters of Sarasota, Florida where he and Anne would frequent.

There is so much to tell of this man and his way. We feel that his spirit and his strength could help others. Our family is considering writing a Biography of the life and times of William Durand Grafton Jr. We think that there would be laughter and tears even for those who did not meet him. We appreciate your time and your consideration and we hope that you find strength in your walk. As our Family Crest reads; Virtus in Arduis… simply translated…Courage in Difficulty.

William D Grafton Jr’s Fight

Bill was a very active man; he seemed at peace when he was busy. So, when he first discovered a shortness of breath in 2002 he was curious about the circumstances. He had never felt this way before. Climbing stairs, getting out of a chair or walking across a room would leave him gasping for air. This condition persisted, so Bill and Anne visited doctors. The conclusions were similar from all that met with Bill; he had Myelodysplasia. Myelodysplasia is considered a rare blood disorder and it is sometimes called a blood cancer. In consultative meetings with specialists Bill was told that his body was not producing red blood cells at an acceptable rate. The lack of red blood cells left Bill oxygen deprived. His heart and his lungs were working harder now due to this physical change. Blood transfusions would be needed to battle the conditions of Myelodysplasia. Bill took the news and he went on to live life to the fullest.

The real culprit in Bill’s fight was his bone marrow. The bone marrow had stopped making the red blood cells and the bone was scarring. Determined to march on and to find a remedy; Bill altered his diet, took Growth Hormones, tried Natural Remedies/Homeopathics and he visited Sainte Anne De Beaupre (a miracle Basilica in Quebec, Canada). A miracle did arrive in 2005 allowing Bill to live life “transfusion free” for twenty two months. This was a happy time for our whole family. Much was accomplished: travels, engagements and reunions.

In late August 2006, Bill had new symptoms that caused some concern. A seemingly harmless bladder infection would begin a string of new battles. These new symptoms called to order new evaluation from a host of new specialists. Upon making visits to his new doctors; Bill was diagnosed with Myelofibrosis. This diagnosis came in October 2006. Over the next few months, this advanced level of sickness would act rapidly. A continued attack of the bone marrow would now be accompanied by an enlarging Spleen. Bill would receive many blood transfusions over his last months and many times he would find he needed blood platelet transfusions as well. His spleen was getting bigger and it was “eating up” all of his platelets. A Splenectomy was discussed as an option but there were concerns as he now had an extremely low blood platelet count (blood clotting was in question). His chances of surviving the surgery (Splenectomy) was a major consideration for all the doctors involved. With a low blood platelet count, an enlarged spleen, low blood pressure and internal bleeding; the disease turned its attention to Bill’s liver. Bill’s liver numbers were now climbing and this brought new concerns to what may or may not be a viable option (the Splenectomy option was side-lined). Bill’s liver numbers did improve but his spleen continued to grow in size, his platelet count continued to decrease and a vicious cycle of blood transfusions and blood platelet transfusions ensued.

Farewell

Sadly Bill lost his fight at 10:37am (EST) on January 18th 2007. Anne was by his side in the end. He battled bravely. Since his fight began and ended; we have learned a lot about this “orphan” disease. We have learned that there are only 200,000 reported cases of Myelofibrosis in the United States. We have found that research is being conducted to find a cure for Myelofibrosis but, due to the fact that few seem afflicted with the sickness other illnesses will gain greater attention and funding. As mentioned earlier; finding a cure on this battlefield will save many on other fronts. We hope our efforts and your contributions will help in the development of new drugs and new approaches. Additionally; we would like to send our thanks to the talented doctors, surgeons and scientists that pursue the cure.