Esmai's need to achieve
Donation protected
Esmai was born on 18th October 2013 and moments after giving birth we noticed a large lump on her lower back, Esmai was rushed in for an Mri scan and the doctors worse fears were confirmed Esmai had a large lipoma that had grown and wrapped up and around her spinal cord.
Esmai was immediately referred to great ormond street where we received the news that Esmai had relative spinabifida and that she was likely to be affected from the waist down and that we were unlikely to have a little girl that would sit , crawl walk etc the spinal lipoma at this stage was approx 20% of her body weight and 16cm in diameter so on a 7lb baby was a significant size.
Very quickly we realised the extent of Esmai's condition when just days old are feet didn't respond to the midwifes checks.
Esmai was referred to physiotherapy at 6 weeks old and ever since has relentlessly had physiotherapy exercises and stretches 2-3hourly carried out by us to give her every best chance and to our amazement Esmai did start to want to sit and crawl. Due to all the nerve endings being completely destroyed by the lipoma that controls the legs we spent hours everyday placing Esmai in the crawling position and moving her legs for her and showing her what to physically do as the signals sent from the brain were being sent to dead nerve endings therefore not responding.
We then noticed that esmais feet never relaxed and always pointed up and had no sensation at all or reflexes from the knees down. Esmais ankles and feet would flop around and have no stability at all and so was given the devastating news that she was unlikely to walk or Stand. After another emergency Mri scan Esmais leading consultant at gosh made the decision to tether the lipoma away from the spinal cord to prevent further loss of feeling and nerve end damage. There was massive risk with the surgery but the lipoma in the long run would continue to grow and cause nothing but damage and destruction to Esmai's body .
So at 11months old Esmai was admitted to gosh and underwent a 13 hour procedure on her spinal cord. The operation was a success and Esmai faced a long recovery with the scar being the width of her back and had to be kept completely flat for a week. The tethering procedure sadly confirmed that Esmai had significant damage to the bladder and bowel nerves and soon after the operation it become apparent that Esmai was not passing urine or stools like normal. Further scans and tests showed the bladder was large and baggy and the muscles were not working in order to release the urine and the Same for her bowel.
Scans also showed swelling to her left kidney which was potentially very dangerous .
We were told that we would need to physically help Esmai to pass urine and to help her bowel so now with medication, and catheterisation 2-3hourly and permanent overnight drainage we hope to keep esmais kidneys protected. One of our biggest battles and frustration in life where Esmai is concerned is sadly getting Esmai the local services like physiotherapy and hydrotherapy that she so desperately needs. The local trust allows Esmai one physiotherapy session every 6 weeks and only offers hydrotherapy in a 6 week block which is one 20minute session once a week for 6 weeks and can only be offered a maximum of 3 times a year if the extremely long waiting list allows and is for post operative patients only so a year on from her operation sadly Esmai doesn't qualify any longer. Hydrotherapy is so important to esmais development as it helps with her pain that she experiences throughout the day and night and helps strengthen esmais muscles and relaxes her muscles so they can be stretched with less pain and more ease. The warm water allows Esmai to move freely and develop muscles she can't develop on land.
Esmai wears splints permanently day and night to enable the security of her ankle and feet which has given her the opportunity to learn to stand. Without splints Esmai stands on the corner of her heel and one foot completely curved in and under with no stability. As Esmai's carve muscles dont work and arent used the muscles basically are tightening and are deteriorating causing the inward curvature of the feet and twist of the knees making walking even harder for Esmai.
Esmai's hips click and are put under huge strain and therefore can be extremely painful for her which again is why regular access to a hydro pool would be amazing.
Esmai is closely monitored by a range of different doctors , nurses , therapists locally but her care is lead and managed by great ormond street. Her appointments are intense and we are quite often extremely overwhelming for Esmai, and it's incredibly heartbreaking as a parent to watch your daughter be pulled , prodded and poked and listen to her scream and know that this will be her life .
However We couldn't be prouder of Esmai as she continues to defy the odds and stand and move more and more confidently even now taking independent steps without her frame.
As any parent would all we want for Esmai is the best chance to lead a near as normal quality life.
Therefore giving Esmai and her muscles the best care now really will give her the chance to defy all odds and continue on the right road of progress. With the nhs system stretched and unable to provide us with weekly consistent care private physiotherapy really is our only option but this comes at a wooping price of £70 per hour and with general living costs and 4 children to support this is something we will have to save for in order to give Esmai block periods of private physiotherapy.
We wish financially we could have it all and money be no object but sadly it is. The equipment available to Esmai through private therapy is like no other and in time we hope to save for a hot tub for our garden so that Esmai can have somewhere to go when in pain and carry out some of her hydrotherapy exercises.
Esmai is a happy , funny, strong willed incredible and inspirational little diva who continues to fight for her freedom everyday, her lipoma continues to grow in comparison to herself therefore causing constant compression.
Our aim is to fundraise and raise as much as we can to give Esmai regular weekly physiotherapy to keep Esmai achieving and developing. Esmai will always lead a different life but she really does have the need to achieve so please help support our little princess continue to fight for her freedom to move
Thank you xxx
Esmai was immediately referred to great ormond street where we received the news that Esmai had relative spinabifida and that she was likely to be affected from the waist down and that we were unlikely to have a little girl that would sit , crawl walk etc the spinal lipoma at this stage was approx 20% of her body weight and 16cm in diameter so on a 7lb baby was a significant size.
Very quickly we realised the extent of Esmai's condition when just days old are feet didn't respond to the midwifes checks.
Esmai was referred to physiotherapy at 6 weeks old and ever since has relentlessly had physiotherapy exercises and stretches 2-3hourly carried out by us to give her every best chance and to our amazement Esmai did start to want to sit and crawl. Due to all the nerve endings being completely destroyed by the lipoma that controls the legs we spent hours everyday placing Esmai in the crawling position and moving her legs for her and showing her what to physically do as the signals sent from the brain were being sent to dead nerve endings therefore not responding.
We then noticed that esmais feet never relaxed and always pointed up and had no sensation at all or reflexes from the knees down. Esmais ankles and feet would flop around and have no stability at all and so was given the devastating news that she was unlikely to walk or Stand. After another emergency Mri scan Esmais leading consultant at gosh made the decision to tether the lipoma away from the spinal cord to prevent further loss of feeling and nerve end damage. There was massive risk with the surgery but the lipoma in the long run would continue to grow and cause nothing but damage and destruction to Esmai's body .
So at 11months old Esmai was admitted to gosh and underwent a 13 hour procedure on her spinal cord. The operation was a success and Esmai faced a long recovery with the scar being the width of her back and had to be kept completely flat for a week. The tethering procedure sadly confirmed that Esmai had significant damage to the bladder and bowel nerves and soon after the operation it become apparent that Esmai was not passing urine or stools like normal. Further scans and tests showed the bladder was large and baggy and the muscles were not working in order to release the urine and the Same for her bowel.
Scans also showed swelling to her left kidney which was potentially very dangerous .
We were told that we would need to physically help Esmai to pass urine and to help her bowel so now with medication, and catheterisation 2-3hourly and permanent overnight drainage we hope to keep esmais kidneys protected. One of our biggest battles and frustration in life where Esmai is concerned is sadly getting Esmai the local services like physiotherapy and hydrotherapy that she so desperately needs. The local trust allows Esmai one physiotherapy session every 6 weeks and only offers hydrotherapy in a 6 week block which is one 20minute session once a week for 6 weeks and can only be offered a maximum of 3 times a year if the extremely long waiting list allows and is for post operative patients only so a year on from her operation sadly Esmai doesn't qualify any longer. Hydrotherapy is so important to esmais development as it helps with her pain that she experiences throughout the day and night and helps strengthen esmais muscles and relaxes her muscles so they can be stretched with less pain and more ease. The warm water allows Esmai to move freely and develop muscles she can't develop on land.
Esmai wears splints permanently day and night to enable the security of her ankle and feet which has given her the opportunity to learn to stand. Without splints Esmai stands on the corner of her heel and one foot completely curved in and under with no stability. As Esmai's carve muscles dont work and arent used the muscles basically are tightening and are deteriorating causing the inward curvature of the feet and twist of the knees making walking even harder for Esmai.
Esmai's hips click and are put under huge strain and therefore can be extremely painful for her which again is why regular access to a hydro pool would be amazing.
Esmai is closely monitored by a range of different doctors , nurses , therapists locally but her care is lead and managed by great ormond street. Her appointments are intense and we are quite often extremely overwhelming for Esmai, and it's incredibly heartbreaking as a parent to watch your daughter be pulled , prodded and poked and listen to her scream and know that this will be her life .
However We couldn't be prouder of Esmai as she continues to defy the odds and stand and move more and more confidently even now taking independent steps without her frame.
As any parent would all we want for Esmai is the best chance to lead a near as normal quality life.
Therefore giving Esmai and her muscles the best care now really will give her the chance to defy all odds and continue on the right road of progress. With the nhs system stretched and unable to provide us with weekly consistent care private physiotherapy really is our only option but this comes at a wooping price of £70 per hour and with general living costs and 4 children to support this is something we will have to save for in order to give Esmai block periods of private physiotherapy.
We wish financially we could have it all and money be no object but sadly it is. The equipment available to Esmai through private therapy is like no other and in time we hope to save for a hot tub for our garden so that Esmai can have somewhere to go when in pain and carry out some of her hydrotherapy exercises.
Esmai is a happy , funny, strong willed incredible and inspirational little diva who continues to fight for her freedom everyday, her lipoma continues to grow in comparison to herself therefore causing constant compression.
Our aim is to fundraise and raise as much as we can to give Esmai regular weekly physiotherapy to keep Esmai achieving and developing. Esmai will always lead a different life but she really does have the need to achieve so please help support our little princess continue to fight for her freedom to move
Thank you xxx
Organizer
Zoe Marlborough
Organizer