HELP Jaime move her arms again!
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HELP JAIME MOVE HER ARMS AGAIN
This is Jaime, she is five years old and is an incredible child who has worked so hard, and defied all the odds to live as normal life as possible.
Jaime suffers from a very rare condition called SMARD1 (only 26 cases worldwide). When Jaime was just 6 weeks old she stopped breathing and this, as it was later diagnosed, is the defining feature of the condition known as SMARD1. As with all surviving children and adults with the condition, she was very lucky as she was in hospital at the time and the doctors were able to save her life. From 6 weeks old she has required a machine to breathe for her 24x7 via a tube in her throat called a tracheostomy. SMARD1 is a cruel disease that slowly robbed Jaime of all muscle function over the next 6 months. She now has no movement below the neck.
Despite all her difficulties, she is a smart little girl and attends Sherbourne Fields School full time. With the help of dedicated teachers she communicates and learns through eye pointing and an eye gaze machine, and has now even started to learn to read. Her hard work means her literacy and numeracy levels are close to her peer group, which is amazing considering her limitations. However the computer is not portable and only trained staff can read her eye pointing reducing her ability to interact with the wider world.
Jaime has never let her disabilities stop her and loves going out and about; she’s been on a boat ride around Loch Ness to hunt for Nessy and been to support her country not only at the Olympics but at the Commonwealth Games too.
When Jaime was nine months old we started to notice her shoulders twitching in the bath, through years of hard work Jaime’s now developed the strength and control so she has full use of her upper arms in water only. Every Friday morning, despite a full week of school, Jaime wakes at 6am with a huge smile on her face to go swimming with the support of volunteer lifeguard, Helen Lewis.
Until recently this has just been a fun activity that gives Jaime the freedom to stretch and exercise. Then someone introduced us to the WREX arm. It’s an exoskeleton that uses a complex system of counterbalances and elastic, to completely take the weight of Jaime’s arm. This in effect replicates the weightless that Jaime has in water. With caution in September we arranged for a trial of the arm, and were amazed at how quickly Jaime understood it and was able to move her arms in the same way we have seen her move them in the water. Since then we have been fundraising to raise the £12,000 needed for Jaime to have the ability to move her arms.
The WREX arms will not only give her freedom to move but could give Jaime more independence and a greater ability to communicate and interact with the world. With this equipment Jaime could
• operate a motorised wheelchair rather than rely on being pushed everywhere
• operate an alert button for when she needs help/medical intervention
• use an iPad and similar devices to communicate and play
• help her to reach her potential at school - with hard work she could even learn to write.
The WREX arms would truly transform Jaime’s life and give her so much more freedom.
This is Jaime, she is five years old and is an incredible child who has worked so hard, and defied all the odds to live as normal life as possible.
Jaime suffers from a very rare condition called SMARD1 (only 26 cases worldwide). When Jaime was just 6 weeks old she stopped breathing and this, as it was later diagnosed, is the defining feature of the condition known as SMARD1. As with all surviving children and adults with the condition, she was very lucky as she was in hospital at the time and the doctors were able to save her life. From 6 weeks old she has required a machine to breathe for her 24x7 via a tube in her throat called a tracheostomy. SMARD1 is a cruel disease that slowly robbed Jaime of all muscle function over the next 6 months. She now has no movement below the neck.
Despite all her difficulties, she is a smart little girl and attends Sherbourne Fields School full time. With the help of dedicated teachers she communicates and learns through eye pointing and an eye gaze machine, and has now even started to learn to read. Her hard work means her literacy and numeracy levels are close to her peer group, which is amazing considering her limitations. However the computer is not portable and only trained staff can read her eye pointing reducing her ability to interact with the wider world.
Jaime has never let her disabilities stop her and loves going out and about; she’s been on a boat ride around Loch Ness to hunt for Nessy and been to support her country not only at the Olympics but at the Commonwealth Games too.
When Jaime was nine months old we started to notice her shoulders twitching in the bath, through years of hard work Jaime’s now developed the strength and control so she has full use of her upper arms in water only. Every Friday morning, despite a full week of school, Jaime wakes at 6am with a huge smile on her face to go swimming with the support of volunteer lifeguard, Helen Lewis.
Until recently this has just been a fun activity that gives Jaime the freedom to stretch and exercise. Then someone introduced us to the WREX arm. It’s an exoskeleton that uses a complex system of counterbalances and elastic, to completely take the weight of Jaime’s arm. This in effect replicates the weightless that Jaime has in water. With caution in September we arranged for a trial of the arm, and were amazed at how quickly Jaime understood it and was able to move her arms in the same way we have seen her move them in the water. Since then we have been fundraising to raise the £12,000 needed for Jaime to have the ability to move her arms.
The WREX arms will not only give her freedom to move but could give Jaime more independence and a greater ability to communicate and interact with the world. With this equipment Jaime could
• operate a motorised wheelchair rather than rely on being pushed everywhere
• operate an alert button for when she needs help/medical intervention
• use an iPad and similar devices to communicate and play
• help her to reach her potential at school - with hard work she could even learn to write.
The WREX arms would truly transform Jaime’s life and give her so much more freedom.
Organizer
Sarah Sale
Organizer
