Help Arran to walk again
Donation protected
Our son Arran was born in December 2013 and for the first 17 months his development was progressing normally, he was a happy, adventurous, cheeky wee boy.
In early May 2015 Arran became acutely unwell and had to be rushed to the Royal Hospital for Sick Children in Edinburgh. Within 24 hours Arran had undergone multiple tests and scans (CAT, MRI and lumbar puncture) due to the severity of his symptoms. His MRI scan came back to show damage to his brain. After 9 days in intensive care and due to the excellent staff at Sick Kids Arran received the suspected diagnosis of having a rare metabolic disorder called Glutaric Aciduria Type 1 (GA1 for short).
His treatment started for a special diet (low protein) to avoid any further brain injury. Unfortunately by this point Arran had extensive brain damage specifically to the area related to motor control (Basal Ganglia ) and had lost the ability to talk, walk, swallow or move in a controlled manner. He had many erratic movements and a feeding tube was used for his special feeds.
After approximately 1 month in hospital Arran was allowed to return home and his new feeding schedule and planning for recovery began. This involved carefully scheduled tube feeding, emergency feeds and avoiding exposure to other potential viruses. We were also introduced to our multiple therapists provided by the NHS for physio, speech, learning and occupational.
On December 24th 2015 Arran finally managed to sit up on his own which was a big step forward given how extensive his set backs had been. Over the last three years he has been making steady progress, he can now eat solid food, he manages to get around by crawling or using his wheelchair, take a few steps and standing with the aid of his walker and standing frame. Arrans speech has come on leaps and bounds since last year and he recently started at nursery before the summer which has been great for him, especially as the first few years of his recovery we had to avoid socialising with other children to prevent Arran picking up any infections. With Arran starting school next August we want to make sure that we have tried everything we can to help him gain some independence, we have been worried that recently his standing and walking has been regressing over the last few months.
So in October this year we found a specialised centre in Oxfordshire called Footsteps which offers intensive therapy sessions and something new to us called the 'spider cage' which we feel will really help with Arrans recovery. This consists of a 2 hour session every day (Mon-Fri) over 3 weeks which will be arranged every 3 months. We have also been advised to have Arran fitted with specialised splints to help with his standing which are not available through the NHS so this is being arranged through London Orthotics .
We have just completed our 2nd week at footsteps and Arran is taking to the programme really well. He enjoys going each morning and tells us everyday that he is going to work hard and "do good standing".
The funding raised will help to pay for his footsteps physio sessions and also the splints arranged through London Orthotics. We will be very grateful for any help towards these costs,, we have really high hopes that the physio and new splints are going to help him so much. We have been advised that intensive physio at a young age can produce very positive results, so the more we can arrange now the better.
The expected costs for the physio sessions and splints are detailed below.
2018 : £3,624
- Footsteps Physio (Q4) - £1,650
- London Orthotics (Splints) - £1,974
2019 : £6,600
- Footsteps Physio (Q1) - £1,650
- Footsteps Physio (Q2) - £1,650
- Footsteps Physio (Q3) - £1,650
- Footsteps Physio (Q4) - £1,650
Any donations will be greatly appreciated and we hope you join our journey to follow in Arrans footsteps. We will update all of his progress for you to follow, you can also see this on the dedicated Instagram .
In early May 2015 Arran became acutely unwell and had to be rushed to the Royal Hospital for Sick Children in Edinburgh. Within 24 hours Arran had undergone multiple tests and scans (CAT, MRI and lumbar puncture) due to the severity of his symptoms. His MRI scan came back to show damage to his brain. After 9 days in intensive care and due to the excellent staff at Sick Kids Arran received the suspected diagnosis of having a rare metabolic disorder called Glutaric Aciduria Type 1 (GA1 for short).
His treatment started for a special diet (low protein) to avoid any further brain injury. Unfortunately by this point Arran had extensive brain damage specifically to the area related to motor control (Basal Ganglia ) and had lost the ability to talk, walk, swallow or move in a controlled manner. He had many erratic movements and a feeding tube was used for his special feeds.
After approximately 1 month in hospital Arran was allowed to return home and his new feeding schedule and planning for recovery began. This involved carefully scheduled tube feeding, emergency feeds and avoiding exposure to other potential viruses. We were also introduced to our multiple therapists provided by the NHS for physio, speech, learning and occupational.
On December 24th 2015 Arran finally managed to sit up on his own which was a big step forward given how extensive his set backs had been. Over the last three years he has been making steady progress, he can now eat solid food, he manages to get around by crawling or using his wheelchair, take a few steps and standing with the aid of his walker and standing frame. Arrans speech has come on leaps and bounds since last year and he recently started at nursery before the summer which has been great for him, especially as the first few years of his recovery we had to avoid socialising with other children to prevent Arran picking up any infections. With Arran starting school next August we want to make sure that we have tried everything we can to help him gain some independence, we have been worried that recently his standing and walking has been regressing over the last few months.
So in October this year we found a specialised centre in Oxfordshire called Footsteps which offers intensive therapy sessions and something new to us called the 'spider cage' which we feel will really help with Arrans recovery. This consists of a 2 hour session every day (Mon-Fri) over 3 weeks which will be arranged every 3 months. We have also been advised to have Arran fitted with specialised splints to help with his standing which are not available through the NHS so this is being arranged through London Orthotics .
We have just completed our 2nd week at footsteps and Arran is taking to the programme really well. He enjoys going each morning and tells us everyday that he is going to work hard and "do good standing".
The funding raised will help to pay for his footsteps physio sessions and also the splints arranged through London Orthotics. We will be very grateful for any help towards these costs,, we have really high hopes that the physio and new splints are going to help him so much. We have been advised that intensive physio at a young age can produce very positive results, so the more we can arrange now the better.
The expected costs for the physio sessions and splints are detailed below.
2018 : £3,624
- Footsteps Physio (Q4) - £1,650
- London Orthotics (Splints) - £1,974
2019 : £6,600
- Footsteps Physio (Q1) - £1,650
- Footsteps Physio (Q2) - £1,650
- Footsteps Physio (Q3) - £1,650
- Footsteps Physio (Q4) - £1,650
Any donations will be greatly appreciated and we hope you join our journey to follow in Arrans footsteps. We will update all of his progress for you to follow, you can also see this on the dedicated Instagram .
Organizer
Tom Pitchforth
Organizer
