Amara's Wish To Walk
Donation protected
Amara is a 3 year old girl from a small town on the east coast of Canada. Amara's story begins when she was born premature at 27 weeks gestation, weighing 2lb 6oz. Amara was rushed to the iwk children's hospital neonatal intensive care unit.
At 20 hours of life Amara had a episode of ventricular dysrhythmia where her heart stopped. This moment still haunts me to this day, we truly thought we had lost our little girl. But amazingly she pulled through with the help of a wonderful NICU nurse who acted quickly and preformed chest compressions. Her first head ultrasound showed Amara suffered a grade 1 brain bleed as well. Amara spent 30 days at the IWK and was transferred to Moncton NICU where she spent an additional 17 days. We were discharged home on August 26th 2017.
Amara was followed through the high risk clinic and at 1.5 years old she was diagnosed with Cerebral Palsy. Specifically Spastic Diplegia, meaning both legs are affected. Amara mostly uses a posterior walker to get around. She is not able to function as most kids do at her age due to the spasticity in her legs. Although cerebral palsy is a non progressive condition the spasticity will constantly wear on her body and cause premature aging and irreversible damage to bone and joints.
Through lots and lots of research we have found a solution that can change Amara's entire life. Selective Dorsal Rhizotomy Surgery. This surgery is done through the spine where the nerve roots that are causing the spasticity are cut, eliminating the spasticity permanently. We sent an application to the best surgeon for this procedure at the St Louis Children's Hospital, Dr T.S Park. Dr Park has mastered a less invasive SDR surgery which is called a single level laminectomy where only 1 or 2 vertebrae are removed. Where as the traditional multi level SDR removes a large number of vertebrae. Dr Park has preformed thousands of SDR surgery's and feels Amara is an excellent candidate for the surgery, and strongly recommends she has it done. Dr Park stated that Amara had potential for independent walking in ALL environments after surgery which is HUGE. As you can read in his letter if Amara waits to have the surgery she may need to have additional surgery to lengthen her calf muscles. This is why it is important for us to have this surgery as soon as possible. You only get one shot at this surgery and we have concluded that this is our guy. Unfortunately the cost of the surgery is very high.
Money raised will pay for the surgery, our stay in St Louis for approximately 3-4 weeks, and intensive post op physio for approximately 1 year. I know it is a trying time for everyone and covid has made our fundraising ideas very limited. Any amount will help and we will be forever grateful for your help in helping our daughter live her best possible life.
MUCH LOVE xoxo
At 20 hours of life Amara had a episode of ventricular dysrhythmia where her heart stopped. This moment still haunts me to this day, we truly thought we had lost our little girl. But amazingly she pulled through with the help of a wonderful NICU nurse who acted quickly and preformed chest compressions. Her first head ultrasound showed Amara suffered a grade 1 brain bleed as well. Amara spent 30 days at the IWK and was transferred to Moncton NICU where she spent an additional 17 days. We were discharged home on August 26th 2017.
Amara was followed through the high risk clinic and at 1.5 years old she was diagnosed with Cerebral Palsy. Specifically Spastic Diplegia, meaning both legs are affected. Amara mostly uses a posterior walker to get around. She is not able to function as most kids do at her age due to the spasticity in her legs. Although cerebral palsy is a non progressive condition the spasticity will constantly wear on her body and cause premature aging and irreversible damage to bone and joints.
Through lots and lots of research we have found a solution that can change Amara's entire life. Selective Dorsal Rhizotomy Surgery. This surgery is done through the spine where the nerve roots that are causing the spasticity are cut, eliminating the spasticity permanently. We sent an application to the best surgeon for this procedure at the St Louis Children's Hospital, Dr T.S Park. Dr Park has mastered a less invasive SDR surgery which is called a single level laminectomy where only 1 or 2 vertebrae are removed. Where as the traditional multi level SDR removes a large number of vertebrae. Dr Park has preformed thousands of SDR surgery's and feels Amara is an excellent candidate for the surgery, and strongly recommends she has it done. Dr Park stated that Amara had potential for independent walking in ALL environments after surgery which is HUGE. As you can read in his letter if Amara waits to have the surgery she may need to have additional surgery to lengthen her calf muscles. This is why it is important for us to have this surgery as soon as possible. You only get one shot at this surgery and we have concluded that this is our guy. Unfortunately the cost of the surgery is very high.
Money raised will pay for the surgery, our stay in St Louis for approximately 3-4 weeks, and intensive post op physio for approximately 1 year. I know it is a trying time for everyone and covid has made our fundraising ideas very limited. Any amount will help and we will be forever grateful for your help in helping our daughter live her best possible life.
MUCH LOVE xoxo
Organizer
Alisha Noonan
Organizer
Port Elgin, NB