Cord blood transplant saves boy, 6, from baffling ailment
Amylynne Santiago Volker calls her 6-year-old son Nicholas “the comeback kid,” and rarely has that title been more fitting: Nic has survived a mystery illness that baffled doctors and threatened his life many times.
Doctors call Nic a medical marvel, a trailblazer who escaped near-certain death through a groundbreaking DNA sequencing and a rare cord blood transplant.
Speaking live via satellite from Madison, Wis., Santiago Volker told Matt Lauer on TODAY Monday that she remains in awe of the strength her little boy showed in enduring countless surgeries and 700 days of hospital care — 526 days in the last two years alone.
“Nic is so resilient and he always faced every day with a smile on his face,” Santiago Volker said.
While Nic hugged a teddy bear and traded high-fives with his dad, Sean Volker, on TODAY, his mother told Lauer of their family’s medical ordeal.
He was just 17 months old when his parents noticed Nic had a wound that wouldn’t heal. When the wound became an abscess, he was taken to a local hospital, where he was given antibiotics. That marked the beginning of an excruciating, four-year medical journey.
A deadly disease, but no diagnosis While Nic was shuffled in and out of hospitals, doctors learned the boy suffered from a disease that caused pencil-prick-size holes to form on his skin. The holes traveled through to his intestines, causing his stool to leech into his system. He developed sepsis, ran a temperature of 105 degrees and also contracted E. coli from his breathing tube.
But Nic’s health started to fail again just weeks later, and he began another round of hospital stays. At age 4, he weighed only 17 pounds. Doctors at the Children’s Hospital of Wisconsin realized that they had to nail down the cause of the boy’s ailment. They asked the hospital’s researchers to sequence Nic’s 30,000 genes to see if one was mutated.
Hospital immunologist Bill Grossman told NBC News it is extremely unusual to sequence the entire genetic code of one person — his team usually works on abstract DNA research. “I was shocked [by the request],” Grossman said. “It was a big leap for what we were currently doing.”
Meanwhile, the Volkers tried to hold their family together. Santiago Volker worried that the couple’s three teenage daughters were getting short shrift while the family concentrated on Nic’s life-and-death struggle. Sean Volker worked overtime in construction to pay the medical bills insurance didn’t cover; when his work dried up, mom went back to work while dad became the primary caregiver.
DNA sequencing solves a mystery But the family struggle and exhaustive hospital research paid off. Thanks to the gene sequencing, Nic was diagnosed with the genetic mutation XIAP, and doctors realized a cord blood transplant — which would essentially give Nic a new immune system — could be a possible cure. In July, Nic got the transplant.
“We saw an improvement in the first two weeks,” Santiago Volker told Lauer. “He was extremely active, played like a normal boy would. Lots of sword fights, and lots of floor time with his sisters and his dad and myself.”
Nic has suffered some complications and setbacks since, but he has kept his spirits up. During his long hospital stays, he donned his favorite Batman costume, complete with bat gloves that sound “kapow!” His mother told the Milwaukee Journal Sentinel Nic likes the musical trio the Jonas Brothers, and she had heard him sing a line from their song “A Little Bit Longer,” which goes, “A little bit longer and I’ll be fine.”
Hopefully, that will be the case for Nic. Santiago Volker told Lauer that her son’s prognosis “is extremely good. His [transplant physician] thinks he will be a long-term survivor. And that he’s possibly cured.”
Nic curled up in his dad’s arms for a nap while appearing on TODAY. But his parents clearly never tired of fighting his mystery illness. Nurses at the Children's Hosptial of Wisconsin told the Journal Sentinel they were amazed at how Santiago Volker dressed to the nines during daily hospital visits, never giving in to hopelessness over her son’s condition.
Likewise, Santiago Volker shooed away well-meaning relatives who told her the family needed to plan a funeral or sign a “do not resuscitate” order.
“I relied on my faith, and I had to hold on to hope,” Santiago Volker told Lauer. “[I] always tried to just persevere and get through the next step and just hope there was another miracle.”
Doctors see a bit of a miracle in Nic as well. If he continues to improve, his case may give hope to others with mystery ailments that could be identified through DNA sequencing.
CordLife opens office in Mumbai, plans to invest A$4 mn in India in 2 years
Tuesday, September 14, 2010 16:45 IST Our Bureau, Mumbai
Kolkata-based CordLife India today launched its new stem cell collection centre at Prabhadevi in Mumbai. Mumbai would be the Western hub of the company's operations which would take care of Maharashtra, Gujarat etc. This centre will be functioning as a sales, marketing and operations force for collection of samples. CordLife has plans to invest up to A$ 4 million (approx) in India in the next 24 months.
With its launch in Mumbai, CordLife would be having full-scale sales, operations, collection and fulfilment facilities here. At present the centre has a current staff strength of 20 people which is expected to grow over the coming months. The company feels that Mumbai is the single largest market and it proposes to invest accordingly to attain maximum volume.
"The official launch of CordLife's stem cell banking services in Mumbai marks another successful milestone for the company. Focusing on high quality services, CordLife has been investing in various innovations to ensure that it provides value-added services to all its customers. International Enterprise Singapore (IES) is happy to have had the opportunity to support the efforts of leading Singapore-based companies such as CordLife to reach out to international audiences," feels Magdalene Loh, IES Centre Director for Mumbai.
The company has also launched two new value added services medical concierge and quality guarantee, pan India. Under the medical concierge scheme, if a transplant is required by a client who has stored their baby's cord blood stem cells with CordLife at any point of time within the tenure of the storage period, CordLife as a part of its contractual agreement will ensure to provide all relevant information regarding transplant physicians, transplant centre, and all logistical support with regard to transportation of the sample as well as the travel of the patient along with his/her family.
The quality guarantee programme on the other hand ensures that families are assured of a viable cord blood unit throughout their contractual agreement period with CordLife. In case their original cord blood unit loses its viability, CordLife will search and pay for a suitable replacement or provide the family a benefit of up to $ 25,000 to defray medical costs. These services are available absolutely free from CordLife India.
Apart from these new services, CordLife has announced its group financial results reporting a growth in revenue despite strong foreign exchange headwind. Speaking on the occasion, the Group CEO, Steven Fang said, "We have recorded a 31per cent increase in new client acquisition from last year. The total number of cord blood units stored has increased by 44 per cent than the previous year." This publicly listed company on the Australian Securities Exchange has clocked a total revenue from its existing operations up to 7.7 per cent to A$ 25.5 million from previous year. Fang opines, "We will work closely with the medical fraternity to further increase the awareness of stem cell banking."
CordLife is the only stem cell banking organisation which stores stem cells from three different sources - haematopoietic stem cells from the umbilical cord blood, mesenchymal stem cells and epithelial stem cells from the umbilical cord.
When used in conjunction with cord blood or bone marrow stem cells, mesenchymal stem cells could increase the success rate of a transplant. They also have immense potential to treat diseases and repair injured tissues or organs. Epithelial stem cells have the potential to rejuvenate skin and mucus membranes to treat non-healing wounds, especially that of patients with diabetic ulcers. Hence it assures of three-fold total stem cell protection. The company is now in the initial stage of identifying prominent institutions and specialist physicians to provide the application of epithelial stem cells on diabetic patients.
Dr Andrew Wu, the group technical director said, "The unique derivation of epithelial stem cells from the umbilical cord is provided by CordLife only at the moment."
Fang also said that, further investments were made in setting up new facilities and offices in Hong Kong, Indonesia and for geographic expansion into the Philippines as well as other major cities of India. CordLife provides stem cell banking services including the collection, processing and cryopreservation storage of cord blood stem cells.
他也指出，的確曾有投機分子利用臍帶血幹細胞醫療領域的管理欠缺和病患的焦急心理，把良心事業當成盈利買賣，投機取巧賺取利益之後從這個行業消失，留下 求助無門的病患，這種事件在美國屢有發生。但范文星相信只有人文化的管理和價值觀的維護，才是康盛人生成功經營並取信大眾的關鍵。2003年，康盛人生榮 獲了本地（新加坡）私人企業界評選出的“企業精神獎”（Spirit of Enterprise）。
