Help Simi stand on his own two feet

Simi is an incredible nine-year old with a bold and brave spirit but he needs your help to get corrective surgery to help him to walk. We are raising funds to send him to the European Paley Institute in Warsaw for a ten-hour-long operation followed by 16 weeks of rehabilitation there that will change the life of this wonderful child.

We know there are a lot of stories out there, but this is ours, we are a Hungarian/English family with 3 children. Our middle child, Simon, has a rare condition called pseudoachondroplasia.

We are always amazed at the strength and spirit of our son. Everyone remembers him. Despite everything, he is full of joy. His name means "to be heard", so thank you for hearing our story now.

Simi (‘Shimi’), as he likes to be known, was the long-awaited second boy to join our family. He seemed to be born healthy, but only a few months after his birth, we noticed that his ability to move was not developing in line with his age. For a long time, no one understood why he was a weary, small baby who didn't like to move, especially not to walk.

By the age of 3, his growth rate had slowed down, his spine appeared deformed, his hands were like starfish and he refused to walk. We took him to doctors in vain, everyone said he was lazy and we were overreacting. We got him a “balance bike” which became his best friend and how he has got around ever since.

He was 3 years old, almost to the day, when we got the first of several diagnoses, all different. We began to do some research into these diagnoses but they didn't quite match his symptoms.  The path ahead of us was frightening.

His bones and cartilage in his joints are developing abnormally. The bones are bending rather than lengthening which is damaging his joints. When Simi was five years old, we received our first accurate diagnosis, confirmed by a genetic test. He has pseudoachondroplasia.

He may well be the first to be diagnosed with this very rare condition in Hungary, so it is difficult to get treatment.

Simi's bones have been growing very slowly, if at all, over recent years. They are deforming. At just 97cm tall, he may actually be getting shorter because his legs are constantly bowing. The disease is associated with lifelong joint pain and very early arthritis, which will simply destroy his joints. His bones make contact with each other at the wrong angles in his hip, knee and ankle joints and they will wear out very prematurely.

At the moment, Simi can only walk a few metres and is often in pain in the mornings when he says "my legs are acting up again today." He can also only travel short distances on his balance bike.

What's in store for him is knee and hip replacements perhaps as early as in his 20s and life in a wheelchair, but it doesn’t have to be that way, the surgery in Poland is his best hope.

For some time, we did not know about any possible treatment for his disorder. It was a great relief when we came across a Facebook group where we could talk to adults and other children living with this disease. It was there that we first heard about the corrective and limb lengthening surgery that the Paley Institute offers.

Simi’s joints can be preserved if his bones are corrected, i.e. straightened. At the same time his legs can also be lengthened, which would make life much easier for Simi.

Simi is 9 years old and soon to enter adolescence, but currently needs practical help with many simple tasks outside our home, which he finds frustrating.

The surgery would not just allow him to walk but also to do “normal” things like sit on a toilet or chair without a stall, wash his hands, get into a car, join in with games on the playground, go on outings, and generally be more mobile.

This is why we are asking for help from anyone who can donate and share our story. We need the expertise which is only found at the European Paley Institute in Warsaw (Ortopedia Dziecięca, Leczenie Schorzeń u Dzieci. Warszawa i Cała Polska - Paley European Institute).

During a 10-hour-long operation, a team of doctors would fit a device to Simi's femurs and tibias, gradually straightening and lengthening them. This straightening and lengthening would take place at the same Institute over a 16 to 17-week-long period of rehabilitation following the surgery carried out by a team of specialist physiotherapists.

Rehabilitation is critical as his muscles, tendons and ligaments need to adjust to his straightening and lengthening legs. The only thing that has helped Simi’s condition is weekly physiotherapy, which has slowed down the rate at which his condition is deteriorating. The course of physiotherapy provided by the European Paley Institute will be essential in transforming our son’s life.

Simi would be 10 cm taller following the surgery and rehabilitation over a stay of about five months in Warsaw.

Unfortunately, the estimated cost of the surgery and rehabilitation is 220,000 USD (roughly £175,000). This is simply an enormous amount of money and we don’t know how it will be raised, but we appeal to you to help us help him.

We want Simi - our intelligent, kind child, full of aspirations and plans - to be able to stand on his own feet and live an independent life for years to come.

Please be part of Simi's future and donate what you can to him. If everyone donates a little, it will amount to a lot. If you can’t donate, please share, share, share! It is going to take people power to raise the funds for him!

We are creating a page so you can follow his progress and we will be in touch the whole way to let you know about the campaign and (hopefully) how the surgery goes.

Thank you so much for listening and to everyone who has donated and shared.

Matt and Detti Chen (Simi’s parents)