RYAN’S STORY

Ryan Walker was born on the 5th of October 1978 in Pietermaritzburg and grew up on a beef and dairy farm in Mooi River. He attended Merchiston Preparatory School and then moved onto Hilton College where he matriculated in 1996. Ryan excelled on the sports field, playing for both Hilton XV and Natal Schools XV at scrumhalf.

Ryan continued to study a BCom through Damelin, while playing rugby from 1997 to 1998 for the Blue Bulls under 21 side, as well as participating in the Vodacom Cup for two seasons. He also played for Landsdowne Road Rugby Club, Ireland, where his team became the All Ireland under 20 championship winners.

In 1999 he moved to Natal representing the under 21 side as well as College Rovers for a season. From 2000 to 2001 he was appointed the Natal Wildebeest Vice Captain and represented the Natal Duikers and the Natal Sharks 7-a-side, which he captained. For the seasons of 2002 and 2003 Ryan played for the Natal Sharks in the Currie Cup and Super 12 competitions. In the 2003 and 2004 seasons he left the Sharks to join Leeds Tykes, representing the team in the UK Premiership and Heineken cup competitions.

Ryan really enjoyed his rugby, but decided that he wanted to pursue a career in other fields.

Ryan is now 39 and lives in Nottingham Road with his wife Paula and two young daughters, Molly (5) and Emmie (3). He farms in Mooi River on the family farm.

In April 2012 Ryan was working on a dairy farm when he became very ill. A GP presumed that this was a result of a tick or spider bite. He started taking antibiotics but by day four his headaches, nausea and stiff neck became so bad that he collapsed and was rushed to St Anne’s hospital in Pietermaritzburg. After three days, many blood tests and a lumbar puncture he was diagnosed with Bacterial Meningitis.

After 10 days in quarantine and intensive treatment Ryan was discharged from the hospital. The recovery was slow and he was very weak for 6 weeks. He began to have fasiculations (twitches) in his biceps and triceps while in hospital, but had no other symptoms until September 2012. “We were told that the tremors in my arms would go away once I had fully recovered, but they never did and have progressed to my legs, particularly my right side and my back“.

“I began to get clumsy and lose my balance and found going downstairs challenging. I also began to get wasting and weakness in my right hand. I’d trip and fall over easily.” Being an active person and sportsman, Ryan found this very disconcerting and sought further medical help. In an attempt to trace the symptoms back to a cause he sought further advice from doctors, with the only reasonable explanation being a tick borne disease.

He then sought the advice of a neurologist, Dr. Wolpe in July 2013. He was admitted into hospital for five days and had extensive blood tests, nerve tests, M.R.I and more lumbar punctures. All the results came back clear. Ryan then went for his follow up appointment with Dr. Wolpe four weeks later who told him that he had Motor Neuron Disease, commonly known as MND or ALS, and that there was no treatment available and that the prognosis was two to five years.

Not willing to accept this diagnosis, Ryan’s family doctor, Dr. Grant Lindsay decided to treat him for Lyme disease (to eliminate the possibility) and he went through four months of intravenous and oral antibiotics. But the symptoms continued to slowly get worse. On the 18th February 2014 Ryan had a second opinion with Dr. Jody Pearl at Sunninghill Hospital in Johannesburg. She did further blood tests for MND mimics but results showed nothing significant and she made the same diagnosis of Motor Neuron Disease.

Ryan underwent Hyperbaric Oxygen Therapy (HBOT) at St. Augustine’s Hospital Hyperbaric Medical Centre and has been to India twice for stem cell therapy in the hope of preventing further degeneration.

After some big expectations from the stem cell treatment and the massive potential that it held, Ryan felt no change and continued searching for possible treatments to keep him strong and slow the progression. In February 2015 Ryan under went Apheresis in Cape Town. This is the removal of blood plasma from the body, it is separated into plasma and cells, and then reintroduced into the body. Traditionally used to remove antibodies in the treatment of autoimmune diseases.

In January 2015 Ryan visited the UK to see Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease at the Motor Nerve Clinic, King’s College Hospital in London.  Ryan was very re-assured by this doctor’s opinion and knowledge. Dr. Ammar is probably the top academic in neurology and Motor Neuron Diseases in the world. He gave Ryan the bad news that he indeed had MND, triggered by his Meningitis in 2012. But also some good news, Ryan seemed to be fairly slow progressing and that Ryan was doing almost everything known to medicine to prolong and stop the progress.

In April 2015 Ryan continued his search for answers in Boston USA at Massachussetts General Hospital. Ryan met Prof. Merit Kudowitz head of neurology at Harvard. Ryan’s case was investigated by a team of scientists and doctors and consisted of a huge number of tests. The aim of the visit was to get onto the patient list to be considered for various up and coming trials. Ryan is still in contact with Dr Kudowitz and hopes to be selected to participate on any of their available trials.

Ryan’s 1st symptoms were in April 2012. As of September 2016, he is still able to talk, walk, dress himself, drive a vehicle and get through most days as a healthy person. His disease progression is “slow” comparatively. What we don’t know for certain is why. Ryan believes it’s a combination of a healthy diet, lifestyle, medicines and various on going therapies.

With the amazing support from the Southern Lodestar Foundation and all our friends and family we continue to give everything available to us a good go. Ryan started a FDA approved drug called Endevarone in August 2017 and we look forward to seeing some positive results.