Treatment and aids
It is a "cure" that cannot cure the disease, but can slow its progression, stop or improve motor function. Its price is 2 million CZK/1 dose. It is applied by lumbar puncture, which is both painful and mentally demanding. With this drug, the development of complications of hydrocephalus (accumulation of cerebrospinal fluid) is possible. Maxík was approved for the first 5 doses. 24th September 2019 he received the first injection. He received three more doses within 14 days. After that, the application is released and carried out every 4 months until the end of the patient's life. The patient must undergo the 'Chop intent' tests required for the insurance company. They must then ask separately for each additional dose of the drug. If the patient does not receive a dose of the drug, the progression of the disease strikes again, and so again he begins to lose strength. We are extremely grateful for this treatment. We do not want to imagine how bad Maxik would be now if it did not exist.
It is a one-time gene therapy that uses the virus to deliver a copy of the human SMN gene to prevent the death of motor neurons. This is an absolute breakthrough in the treatment of genetic diseases. In clinical trials, despite the doctor's understanding, 2 children even stood on their own two feet. This treatment is now approved only in the US, pending approval in the EU. It is expected in the first quarter of this year. Therefore, the drug is not covered by the insurance company. The main condition is the application within 2 years of age of the child. When the children were older, the clinical trial was suspended as many adverse reactions occurred. So far, it looks like the treatment will not be available for older children any time soon. However, it is the most expensive drug in the world, its price in the US is 2,125,000 dollars.More information about the drug here.
A video with Evelyn given therapy shortly after birth (this brings the most effective effect) can be found here.
Maxík therefore does not have much time left for his application. On 7th June 2020 he will be 2 years old and the day after will unfortunately be too late...
The treatment also includes regular rehabilitation, intensive rehalibitation, swimming, spa and hipporehabilitation stays. Respiratory rehabilitation is also important. Patients are treated by a multidisciplinary team (neurologist, orthopedist, physiotherapist, pneumologist)
Rehabilitation- basic regular expenses:
Centrum Arcada - rehabilitation centre 850 CZK/hour - Maxík usually attends 3 times a week - 10, 200 CZK/month
Rehabilitation in 'Krásná rehabilitace' 550 CZK/hour- Maxík now attends once a week, 2,200/month
Hipotherapy 150 CZK/15min - Maxík now visits 1x week, 600 CZK/month Swimming
Rehabilitation that we would like to undergo:
Intensive neurorehabilitation program in Arcadia for 14 days/2 hours a day - 22,600 CZK
Hipotherapeutic intensive stay in the center of Mirákl - 12,500 CZK (20,900 CZK is the price with accommodation and diet, accompanied by one parent)
Hipotherapeutic intensive stay in the centre Ryzáček (intensive hippotherapy stay is to be repeated up to 3 times a year as recommended)
Adeli medical center - rehabilitation program 12 days (3,480 euro), 18 days (5,220 euro) accommodation 52 euro/night + meals for a child and one 43.4 euro/day.
12 days is 4,624.8 euro
18 days 6,937.2 euro
Special program in spa Klimkovice Reha motion:
Rehabilitation program 14 days 20,495 CZK, 21 days 30,850 CZK, 28 days 54,125 CZK
The program can be combined with a spa proposal, when part of the procedures is paid by the health insurance company
15 days 9,490 CZK, 22 days 14,740 CZK, 29 days 19,990 CZK
Theratogs outfit - CZK 18,000
Training for Theratogs (introduction to the principles and possibilities of the TheraTogs clothing system and training for home rehabilitation) - CZK 5,000
Squiggles Stander - 78 000 CZK (if approved by the insurance company, the price to be paid by us 9,292 CZK)
Special car seat
Panthera micro (approx. up to 3 years) - basic price 48,700 CZK (without accessories) - the insurance company doesn't pay for this
Walker Kidwalk - 92,000 CZK (not paid by IC)
Electric cart Koala - basic price 193,000 CZK (without accessories) - (not paid by IC)
Motomed gracile (not paid by IC)
Ortsons for feet Rehabilitation aids for home exercises
Assistance dog 200,000 CZK
Vitamins, food supplements
And unfortunately it does not end...
In the future, construction modifications of our home will be necessary (either 2 platforms or an elevator are needed). Also complete reconstruction of the bathroom for the disabled people, building modifications of already renovated parts of the house (enlargement and acquisition of new doors). In winter also heating of a very steep entrance to the house.