11% Goal: £3,000.00 GBP
( 06/30/2020 00:00 )
About the story
December 10, 2016, was the most wonderful day of our lives. Our son, Tomika, was born. Fantastic, smiling, vibrant baby. Around the age of six months, we had problems in the development of movement. In February 2018, the tests stated that it had the most severe type of spinal muscle atrophy, a patient with type 1 SMA. There was no cure for this disease in Hungary, and 80 % of small patients do not reach the age of 1-1.5 years. Tomika was then 15 months old. The Hungarian doctors predicted a slow weakening without breathing and then stopping breathing. But we didn't give up, we just couldn't give it up because we want to believe and do whatever it takes, most of all, to fight! For him and with him. After a lot of research, luckily, we found out there was an injection called Spinraza, which as a course of treatment could save his life. Our real story begins here.
On 19 March 2018, we arrived in Liege, Belgium, for a consultation where Tomika was selected for the Spinraza drug experiment program. Thus, the price of the injection was EUR 100,000 / piece, it did not have to be paid, only the hospital costs, the costs of travelling and staying, which occasionally cost 6-700 thousand Hungarian forints. Together with the consultation, we have been to Belgium five times in two months, where Tomika has already received four injections. Tomika reacted very well to the first injections, his muscles are getting stronger, not falling forward in the feeding chair, not just lying down as he did before the injections, but he can sit up and stand alone for half an hour safely. He's using his hands more and more, and he can play alone, and even up to 20 minutes in a stander. This is the miracle for us, we got him back and his doctors are very hopeful.
After the first 4 doses, he should only receive maintenance injections every four months. Since then the treatment has become available in Hungary under certain conditions. We had also submitted a request to the National Health Fund to get the next injection in September in Hungary. Fortunately, we received a positive evaluation. A few months ago, this disease was still incurable in Hungary, many tests, are not yet available, are essential to continually improve Tomika's condition. Therefore, medical control is very important in every six months in Belgium, as there are doctors who have been using this injection treatment for years and can carry out all the vital tests. In addition to the injection treatment, our baby needs constant physiotherapy, medical aids, and motion rehabilitation.
Unfortunately, there are no support tools available for his illness at home, so we must go to Milan, Italy every six months. There is a movement rehabilitation centre which has provided support for SMA babies for years. We bought him the necessary corset, seating module and orthosis. As Tomika grows, we must replace them every six months because they are no longer suitable for him. The price of a corset is 1,000 EUR, the seating module costs another 1,000 EUR, next time we can buy a small wheelchair and a new stander with a total price of 7,200 EUR. The cost of our last trip to Milan exceeded 3 million Hungarian forints. Here we bought two life-saving machines (suction device, cough assist machine), which are worth 2 million HUF. Furthermore, at home, we take him several times a week for physiotherapy, physiotherapy, baby swimming, to promote muscle development in as many ways as possible. In two months, we travelled 17,000 km to save his life, so that Tomika could live his daily life as a happy, lively little boy. We hope to spend a lot of birthdays and Christmas together as an average family.
Unfortunately, the financial burdens associated with these life-saving trips, the purchase of rehabilitation tools, our family cannot bear alone. Every little help matters a lot! Our next big goal is to get back to Italy and Belgium. Tomika has outgrown the tools that were made in Milan half a year ago and the date of the mandatory tests is also slowly approaching. We would like to get him a new corset to prevent the development of scoliosis and a stander. We also made him a stander at home, in which he can stand alone for up to 20 minutes, but unfortunately, due to its structure, it is not good for walking. We would like to buy a lightened, improved version of it in order that he can take the first steps of his life. In Milan, several important metabolic tests would be performed again which are not yet available at home. It’s essential to know how his muscles grow, how well these developments go, or if we need to change something. In Belgium, we want to take part in the half-yearly recommended sleep examination, meet our therapists, our pulmonologist, our neurologist to see how much Tomika has developed in recent months. If we manage to do this, our Belgian doctors say Tomika will be able to ride a bicycle in a few years and live a long, happy life.
• Small wheelchair
• New stander