We were extremely happy when expecting twins. Nothing indicated that they would appear 2.5 months too soon, and each of them would weigh only 2,4 lb. Marta’s prematurity can hardly be seen, Paulina will unfortunately fight with its results for the rest of her life.
Brain injuries were visible immediately, yet in the ICU, hence we started fighting for Paulina's health right after birth. The diagnosis of about two-year-olds - spastic quadriplegic cerebral palsy , meant "only" that we continue to work as much as possible. We did not break down because we simply were not allowed to. Later, it became much harder, when Paulina started to ask why she was not able to walk like her sister; she was not able to crawl like her 1.5 years younger brother. Why, while they are having fun, she has to exercise so much. Fortunately, after a while she smiled back, as if she understood that she was just less fortunate, but also that there was a great hope for improvement under condition of hard work.
The siblings compensated everything with shared games, giggles, help. Recently, we were blessed with the youngest son, Paulina loves him so much, spends time with him on the floor and is already planning to play together as he grows up a little. Currently Paulina is 6 years old, very close to 7. She is extremely cheerful. She goes to school she loves. Apart from her sister, who is a huge support for her, she has a whole bunch of colleagues there. At the same time, she trains like a professional athlete. And she is making progress!
It is impossible to describe her and our joy with every little new skill, every success. Unfortunately, slowly all our activities begin to lose with spasticity i.e. increased muscle tone. Her legs are so tense that it is impossible to loosen them. Strong, uncontrolled muscle tension blocks hardly-earned skills. The uncontrolled tremor of the muscles increases dramatically. Every night Paulina wakes up and calls to help "untie" tense and twisted legs. What's worse, in the period of intensive growth, in which Paulina enters, the body undergoes deformation, because painful contractures appear. It's hard to keep her balance, which makes her fall over, even in a sitting position.
There is no reflex of putting hands on, every rollover is a blow to the head. There are operations that will allow Paulina to live without pain and will give her a chance for independence. 1. SDR - Selective Dorsal Risothomy. It is a very complicated operation performed on the spinal cord, allowing to permanently get rid of spasticity from the legs. 2. Orthopedic surgery for the elongation of the thigh muscles (hamstrings) - PERCS - performed few days after the SDR, will support it, allow to get rid of the "scissor" walk, also prevent a number of orthopedic operations in the future. The clinic in St.Louis, USA, where Paulina was qualified for treatment, is the best place in the world for these operations. Dr TS Park performing SDR operation, has been operating for 30 years, operated on over 4,000 patients, is definitely a master in this field. He performs the operation only on a single circle, instead of on few, which is also a great advantage in comparison to other clinics in the world.
We met Dr. TS Park personally during his visit to Katowice, Poland on November 7, 2018, he examined Paulina, confirmed that SDR + PERCS operations are the best possible opportunity for her, as we can expect as follows: - spasticity will be permanently reduced - sitting and standing postures will improve - transitions between postures will be easier and faster - balance and level of comfort will both improve -
Paulina will improve her ability to walk using a walker - there is a small chance of walking with crutches! Who among you, Ladies and Gentlemen, would not do anything to help your child in the best possible way? Although Paulina will not walk alone, there is a chance that after surgery and very intensive rehabilitation, she will walk with crutches. Just imagine that, it means independence, without a deformed body, without cruel pain. Unfortunately, the cost of both operations is over 59,000 USD. We are not able to finance them ourselves, therefore we kindly ask for your support.
Mom Agnieszka and dad Marek with always supporting siblings: Marta, Maciej and Szymon.