For the first several months after our son was born, we did not know that he was not healthy – it was the time of innocence, happiness and joy! However, as the time went by, we started to see that there was something wrong with our child. At 1 year 4 months of age, Grisha was diagnosed with Cerebral Palsy.
Our son is four and a half now, he is a joyful little boy with a beautiful smile who cannot sit, stand, walk, speak, or eat regular food due to his difficulty swallowing. At the same time he is a human being, who understands a lot, wants to enjoy life, and explore the world!
Raising a child with special needs is very unique experience. It seems to be clear to everyone on the outside, but believe me, it is much harder physically and emotionally than you can even imagine! We have countless hours of physio, occupational and speech therapy, aquatic lessons, early education, acupuncture and so much more. We have frequent visits to different doctors and clinics. We are constantly putting on orthotics, learning how to use different devices such as standers and walkers, going for intensive courses of treatment at home and away and most importantly hoping and hoping and hoping that every day, every minute there will be a change!
Unfortunately, the life of a child with Cerebral Palsy gets more complicated with time. Grisha has spasticity, which means that his muscles are in constant state of contraction which prevents normal movement. It is getting worse and worse and is preventing Grisha from doing simple activities like using his hand properly. But the worst part is the spasticity in is legs. Because of it he cannot sit, as his legs are abnormally straight and crossed. He cannot stand as he immediately goes onto his tip toes, nor can he make steps. Moreover, because of significant spasticity, Grisha has started to develop hip dysplasia which, according to the doctor, over time leads to severe pain as his hip joint will become more damaged. At four years old, he is already someone who is deprived of m
any things that most children enjoy. He struggles doing simple things in his life, and cannot even explain what is happening with him or complain. This poor child going to be in pain and suffer!
Of course, we started to look for options to prevent or delay his hip dysplasia and fight his spasticity. Luckily, there is a surgery that can decrease spasticity and help to delay the process of his hips getting out of his joints, but unfortunately it can be done only in the United States. Selective Percutaneous Myofascial Release surgery (SPML) involves making small cuts on fascia and muscle of the legs along with using alcohol to block certain nerves causing certain spastic muscles to relax.
This surgery (including hospital ) costs 12,396 USD (15,617 CAN), in addition to buying airplane tickets and booking a hotel. As well, after this surgery, Grisha will still need many different therapies to fight for his future since his condition is not going to resolve completely.
It has been 4 years since we started different therapies for our son and the majority of them have been private. As Grisha needs specialized care 24 hours a day, my husband is unable to work, as he stays with Grisha. I work as a midwife, often working at night and on weekends, and my income alone supports our family and Grisha’s additional treatments. We also have another child at University who also requires financial support. Unfortunately we are running out of resources.
Please help us, as we are needing to raise more money for this SPML surgery which we hope to do in March 2018. It will help Grisha to stay pain free longer and improve his ability to move and maybe even to walk! Any donation, help and support will be greatly appreciated!
Thank you! God Bless you
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