Jonathan's wish to walk - SDR surgery

Hi everyone,

 

Let me introduce you to my lovely son, Jonathan . He is a 3 years old boy with hemiplegia, cerebral palsy and his big dream is to walk and play like his peers.

Jonathan is a very bright, little boy who loves tractors, diggers and all engines.. He has two older sisters Sarah and Sophie. They love each other so much. We live in Dublin.

Just a few days before his 3rd birthday we got wonderful news, that Jonathan is accepted for the SDR surgery with Dr T.S. Park in Children's Hospital in St. Louis, USA.

Unfortunately, Jonathan's right side of body is affected by spasticity, he cannot walk independently, as he is not able to balance his body. We got hope from Dr T.S. Park, that after SDR surgery, Jonathan will be able to walk independently in all environments, which is a fantastic opportunity for our little boy. Jonathan has already had a very difficult time in his short life..

Jonathan was born prematurely at 27 weeks +2 days as an identical twin with only 997g weight, in Dublin hospital in July 2018. Very sadly his twin brother Daniel died in utero shortly before delivery. Both babies were affected by twin to twin transfusion syndrome. As a result of this Jonathan suffered hypoxia.

Since discharge from the hospital, where Jonathan spent 3 months, his days are full of medical appointments (cardiology, neurology, ophthalmology, dietitian, osteopath), physiotherapy, occupational therapy, speech and language therapy, all in the fight for his mobility and independence in future. Unfortunately we are fighting against spasticity and we are losing. It is the pain that he will have to endure on a daily basis with spasms, that upsets us the most.

However, there is this life changing SDR surgery.. but it comes at a price, which we are not able to meet as family itself and we are asking for your help to raise funds. We need to bring Jonathan to St Louis, USA for the surgery and remain there for almost 5 weeks. On return home Jonathan will then need ongoing intense physiotherapy to build up his muscle strength.

 

Selective Dorsal Rhizotomy (SDR) is a life changing surgery used to eliminate spasticity (muscle stiffness) in some children with cerebral palsy.

 

Spasticity has an impact on motor function and quality of life. It can affect gait, cause pain, and contribute to muscle contractures which can lead to deformities. Nerve fibres running from the muscles back to the spinal cord play a major role in maintaining the typical muscle stiffness seen in spasticity. SDR is a surgical procedure performed on these spinal nerve fibres to eliminate levels of spasticity in the legs.

 

Jonathan is our sunshine, that lights up the dark clouds every day and we try to be strong for him. We are begging you, help us protect our son from a wheelchair and permanent disability. We have already lost one son and we could not cope with the fact that Jonathan would be dependent on other people for the rest of his life. We cannot lose the chance of his independence and better life. He is a smart and bright boy and deserves the best in life!

Update:
We are very lucky as we found wonderful polish girls who are going to run auctions for Jonathan and the polish fundraiser siepomaga opened the fundraiser as well: https://www.siepomaga.pl/jonathan-lach

We are going to combine all powers to raise in total about 100k eur = 60341 USD for the surgery (SDR + PERCS), 31460 eur physiotherapy post op and 14850 eur associated costs: accommodation, flights, rental for 5 weeks.
But we still need your help as never before to raise that huge amount.
Please share, support ❤️

 

 

Thank you for your support.

God bless you,

Agnes and Andy,