Sarah's story to date in our local paper.
TV film was turning point for Sarah
By Hector Mackenzie, Ross Shire Journal
Published: 12 March, 2008
A HOLLYWOOD star may never know the impact she has had on a Highland family.
Rona and Ian Matheson’s world was thrown into turmoil after it emerged their daughter Sarah, now 6, was suffering from a severe form of epilepsy that could see her facing anything up to 70 seizures a day.
A “drop attack” could result in the little girl falling to the ground at any moment. The Muir of Ord family, who liken the hugely upsetting experience to “passing through a hurricane”, were, at their lowest ebb, living an hour to hour existence. Their home address was well known to the ambulance service and Sarah spent upwards of 20 weeks in hospital.
Sarah’s seizures began, when she was two-and-a-half years old. Her condition was initially controlled by drugs until, in November 2006, the seizures returned. Only this time, the drugs didn’t work. There followed a nightmarish six months during which the “window” between seizures became shorter and shorter and the hospital admissions started to rack up. Then, in June last year, Sarah was diagnosed with Doose Syndrome, also known as Myoclonic-Astatic Epilepsy (MAE).
A form of epilepsy typically encountered in early childhood, it is often highly resistant to medication.
The family, like many others before them, were to learn there are many different types of epilepsy. Children like Sarah, diagnosed at the severe end of the Doose spectrum, often have great difficulty finding an effective treatment. “Sarah was having up to 70 seizures a day,” recalled her mother, Rona, whose time with Blythswood working with orphaned children in Romania helped give her strength and a sense of perspective to soldier on. “It was a severe case and the drugs were not working.”
Sarah was given a drug called clonazapam that was helping provide a two to three week respite between seizures. The downside was that the dosage had to be repeatedly increased to remain effective. Such was the severity of the situation the little girl was on many occasions admitted to Raigmore Hospital’s High Dependency Unit, a step away from Intensive Care.
Doggedly researching the condition in a bid to find a way forward, Ian and Rona found themselves trying to balance the demands of a busy family life — they have three other daughters, Anna (10), Talitha (8) and Elmarie (5) — with the need to be ever-vigilant over Sarah’s condition.
“The drop attacks were very stressful and naturally very upsetting, both to ourselves and to Sarah,” recalled Ian, the IT manager with Blythswood. “There were times when she was black and blue.” There was the constant fear, for example, that she might fall down the stairs. But while it was an exhausting and extremely challenging period in their lives, at times “an hour to hour existence”, Ian admits, they never despaired. The Christian couple found immense support from family, friends and the church.
As the case was probed by Ninewells Hospital neurologist Dr Alice Jollands, a natural, instinctive teamwork began to build up between health professionals working in different parts of the country but united in a desire to get to the bottom of the case.
Meanwhile, back in Muir of Ord, Ian and Rona recalled an earlier Friday night viewing of a film called First Do No Harm. Produced by the enormously successful Jim Abrahams, best known for spoofs like Airplane! and the Naked Gun series, it stars multiple Oscar winner Meryl Streep and tells the story of a determined woman who challenges the received wisdom of doctors when her personal research uncovers a little-known treatment called the ketogenic diet.
Abrahams, whose own son, Charlie, had suffered a similar form of epilepsy to that experienced by Sarah, felt so strongly about the issue — and was so astounded by the results of the diet — that he called in favours and persuaded Streep to star in a straight-to-TV movie designed to spread the word.
Ironically the Mathesons had, at the time they initially watched the film, been grateful that their daughter’s case was never as bad as that of the little boy portrayed in it. They now feel they were meant to see a film that was to prove a turning point in their own daughter’s treatment.
Said Ian, “When you get a diagnosis you become part of a family of people similarly affected, whether you want to or not. At least we were no longer dealing with an unknown quantity. We have never been without hope and have been greatly blessed in terms of things that have happened.”
Naturally it occurred that the diet might be beneficial to Sarah. Ian tells how he had been at a church meeting talking about Blythswood and had mentioned Sarah’s illness towards the end of his address. He learned that many people had been praying for his little girl. The following day, doctors diagnosed her condition, setting the family on the path to an answer.
While the diet was virtually unknown at Raigmore Hospital, the couple found paediatrician Dr David Goudie positive about trying it.
However, the highly specialised treatment — and the high-fat ketogenic diet is regarded as such — would first require a dietitian to be trained up. Aside from the challenge of finding someone willing to volunteer, no funds could be identified for such an enterprise. An emailed appeal for help from Matthew’s Friends coordinator Emma Williams was answered with an immediate return phone call.
Emma set up the charity after being seeing the remarkable benefits of the ketogenic diet on her own son, Matthew.
She had been “fobbed off” by doctors after stumbling on details of the diet during her own research but persevered and was amazed by the results. Ian said, “She phoned and said if they tell you there’s no money tell them there’s a pot of money for use in Scotland that could be used to train a dietitian.”
And when the couple then found a dietitian up for the challenge, they began to sense a greater plan coming together. “Our own neurologist said it was a miracle how it all came together,” said Ian.
“At Raigmore they worked as a team, took on Sarah, a highly complex, specialised case, and provided an amazing service. These are the stories you tend not to hear about. It was an answer to a prayer.”
There was an immediate improvement within the first month of Sarah going on to the diet.
She was able to go back to school after months of absence and soon was back on her bike — unthinkable at one stage.
Sarah is slowly being weaned off drugs and the hope is she will one day be free of them altogether.
The little girl, fascinated by ballet, was thrilled when Dundee-based children’s charity fundraiser Jim Michie organised a family trip to see Sleeping Beauty at Eden Court.
A backstage dance with the prince and princess was a fairytale ending to an enchanting evening and she was gifted a ballet slipper as a memento.
The Mathesons are keen to tell their story to pay tribute to those who have helped them — not least the team at Raigmore Hospital whose help allowed them to remain at home and maintain a semblance of normal family life.
Dr David Goudie said, “It has been a huge burden on the family — it has been quite a long process.
“We feel Sarah has improved a lot and attribute that to the diet. She has been through a rough time. We can’t expect to be experts in everything but we can network with other specialists and experts and work as a team.
“Hopefully this is going to make a big difference to her and help us get her medication down.”
Ian meanwhile stresses the importance of their faith. “It has helped carry us through. There were times when it was like a hurricane. As Christians we see that things work together for good.
“We never despaired. It has greatly strengthened our faith and we give God the glory in this.”
-------------------------------------------------------
Aditional photo that did not make it into the article
A “drop attack” could result in the little girl falling to the ground at any moment. The Muir of Ord family, who liken the hugely upsetting experience to “passing through a hurricane”, were, at their lowest ebb, living an hour to hour existence. Their home address was well known to the ambulance service and Sarah spent upwards of 20 weeks in hospital.
Sarah’s seizures began, when she was two-and-a-half years old. Her condition was initially controlled by drugs until, in November 2006, the seizures returned. Only this time, the drugs didn’t work. There followed a nightmarish six months during which the “window” between seizures became shorter and shorter and the hospital admissions started to rack up. Then, in June last year, Sarah was diagnosed with Doose Syndrome, also known as Myoclonic-Astatic Epilepsy (MAE).
A form of epilepsy typically encountered in early childhood, it is often highly resistant to medication.
The family, like many others before them, were to learn there are many different types of epilepsy. Children like Sarah, diagnosed at the severe end of the Doose spectrum, often have great difficulty finding an effective treatment. “Sarah was having up to 70 seizures a day,” recalled her mother, Rona, whose time with Blythswood working with orphaned children in Romania helped give her strength and a sense of perspective to soldier on. “It was a severe case and the drugs were not working.”
Sarah was given a drug called clonazapam that was helping provide a two to three week respite between seizures. The downside was that the dosage had to be repeatedly increased to remain effective. Such was the severity of the situation the little girl was on many occasions admitted to Raigmore Hospital’s High Dependency Unit, a step away from Intensive Care.
Doggedly researching the condition in a bid to find a way forward, Ian and Rona found themselves trying to balance the demands of a busy family life — they have three other daughters, Anna (10), Talitha (8) and Elmarie (5) — with the need to be ever-vigilant over Sarah’s condition.
“The drop attacks were very stressful and naturally very upsetting, both to ourselves and to Sarah,” recalled Ian, the IT manager with Blythswood. “There were times when she was black and blue.” There was the constant fear, for example, that she might fall down the stairs. But while it was an exhausting and extremely challenging period in their lives, at times “an hour to hour existence”, Ian admits, they never despaired. The Christian couple found immense support from family, friends and the church.
As the case was probed by Ninewells Hospital neurologist Dr Alice Jollands, a natural, instinctive teamwork began to build up between health professionals working in different parts of the country but united in a desire to get to the bottom of the case.
Meanwhile, back in Muir of Ord, Ian and Rona recalled an earlier Friday night viewing of a film called First Do No Harm. Produced by the enormously successful Jim Abrahams, best known for spoofs like Airplane! and the Naked Gun series, it stars multiple Oscar winner Meryl Streep and tells the story of a determined woman who challenges the received wisdom of doctors when her personal research uncovers a little-known treatment called the ketogenic diet.
Abrahams, whose own son, Charlie, had suffered a similar form of epilepsy to that experienced by Sarah, felt so strongly about the issue — and was so astounded by the results of the diet — that he called in favours and persuaded Streep to star in a straight-to-TV movie designed to spread the word.
Ironically the Mathesons had, at the time they initially watched the film, been grateful that their daughter’s case was never as bad as that of the little boy portrayed in it. They now feel they were meant to see a film that was to prove a turning point in their own daughter’s treatment.
Said Ian, “When you get a diagnosis you become part of a family of people similarly affected, whether you want to or not. At least we were no longer dealing with an unknown quantity. We have never been without hope and have been greatly blessed in terms of things that have happened.”
Naturally it occurred that the diet might be beneficial to Sarah. Ian tells how he had been at a church meeting talking about Blythswood and had mentioned Sarah’s illness towards the end of his address. He learned that many people had been praying for his little girl. The following day, doctors diagnosed her condition, setting the family on the path to an answer.
While the diet was virtually unknown at Raigmore Hospital, the couple found paediatrician Dr David Goudie positive about trying it.
However, the highly specialised treatment — and the high-fat ketogenic diet is regarded as such — would first require a dietitian to be trained up. Aside from the challenge of finding someone willing to volunteer, no funds could be identified for such an enterprise. An emailed appeal for help from Matthew’s Friends coordinator Emma Williams was answered with an immediate return phone call.
Emma set up the charity after being seeing the remarkable benefits of the ketogenic diet on her own son, Matthew.
 |
Sarah Matheson with parents Rona and Ian. Photo Derek Gordon, |
And when the couple then found a dietitian up for the challenge, they began to sense a greater plan coming together. “Our own neurologist said it was a miracle how it all came together,” said Ian.
“At Raigmore they worked as a team, took on Sarah, a highly complex, specialised case, and provided an amazing service. These are the stories you tend not to hear about. It was an answer to a prayer.”
There was an immediate improvement within the first month of Sarah going on to the diet.
She was able to go back to school after months of absence and soon was back on her bike — unthinkable at one stage.
Sarah is slowly being weaned off drugs and the hope is she will one day be free of them altogether.
The little girl, fascinated by ballet, was thrilled when Dundee-based children’s charity fundraiser Jim Michie organised a family trip to see Sleeping Beauty at Eden Court.
A backstage dance with the prince and princess was a fairytale ending to an enchanting evening and she was gifted a ballet slipper as a memento.
The Mathesons are keen to tell their story to pay tribute to those who have helped them — not least the team at Raigmore Hospital whose help allowed them to remain at home and maintain a semblance of normal family life.
Dr David Goudie said, “It has been a huge burden on the family — it has been quite a long process.
“We feel Sarah has improved a lot and attribute that to the diet. She has been through a rough time. We can’t expect to be experts in everything but we can network with other specialists and experts and work as a team.
“Hopefully this is going to make a big difference to her and help us get her medication down.”
Ian meanwhile stresses the importance of their faith. “It has helped carry us through. There were times when it was like a hurricane. As Christians we see that things work together for good.
“We never despaired. It has greatly strengthened our faith and we give God the glory in this.”
-------------------------------------------------------
Aditional photo that did not make it into the article
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