Prośba o pomoc dla Leosia i Oli!

UPDATE 13.11.2023 r.

We started our fundraiser a year ago and we still run it. So far, 5 immunoglobulin infusions were provided to Ola and 3 to Leoś. And it;s all thanks to YOU! – THANK YOU VERY MUCH!

Ola improved her cognitive functions and is no longer as timid as she used to be. She developed speech and learns to ride a pedal bike. Unfortunately, she still can get lost in her activities, obsessively climbs, often bursts into hysterical crying and needs safety “valves” like a small child. She sometimes experiences bedwetting.

Leoś’s number of tics decreased, and he can cope with emotions a little better. There is also a slight improvement in learning new things and he can also engage in cooperation or help in doing something useful. Unfortunately, he developed aggressive reactions (giving back even for normal words and messages), great lack of control over extreme emotions (anger, joy), extreme need to be in constant contact with parent/guardian, constant engagement of attention and repeating activities after his sister. He also often experiences bedwetting.

The children require constant attention and care. Therefore, further treatment is necessary. Immunoglobulin infusions, tests, further therapies, medications, consultations. We would like Ola to be as joyful and smiling as she used to be, and Leoś to return to his former self, perhaps very energetic and dynamic, but not a child living in constant tension and fear, shouting out every smallest emotion and need. Without constantly clinging to clothes and persistent OCD. So that they both develop like other children and can go to school/kindergarten.

That's why we continue to ask for SUPPORT. Under the specificity of PANS/PANDAS, it does not simply end, further treatment is still necessary. And only thanks to YOU, all of this was possible and can be AVAILABLE to them again!

Justyna and Przemysław, Parents

Request for help for Leoś and Ola!

Half a year ago we organized a fundraiser for our younger child. We would never have thought that we would be asking the same for our Leoś. Unfortunately, our older son was also diagnosed with PANS/PANDAS syndrome. The disease manifests itself a little differently than in a younger child - Leoś has a lot of tics, OCD, fears and huge hyperesthesia (which makes it difficult for him to function on a daily basis), he often has no control over his emotions. There are also problems with muscle tone and strength.

It all started in the spring. Leoś received AEFI, then he got contact allergy on his hands and ears. He began to act strangely: constantly pulling up his socks, constantly touching his face with his fingers, obsessively making repetitive movements, he had balance problems. Seeing this and remembering the experience with our younger, PANS/PANDAS patient, Ola, we started diagnosing him right away. To our despair and surprise, the suspicion of the same disease was confirmed. After consulting with a neurologist and doctors from the St. Luke Clinic from Gdańsk, we decided to treat him with immunoglobulin infusions. This is a chance for him to get out of the disease before it develops for good, or at least to limit its negative effects. The amount of medicine to be infused is calculated based on the child's weight - so the costs are huge. It is also necessary to mention here the additional costs of examinations, travel, consultations and medicines, which are an additional burden and which we incur on a daily basis.

Therefore, we are asking for help in collecting the necessary amount for the basic series of immunoglobulin infusions for Our Leoś. We will also do everything to make it possible for him. However, the amount is large and that is why we are asking you, People of Good Will, for support. Every support is precious to us! We will do everything to ensure that our children have a happy childhood and a healthy life in the future.

Leoś learns to read and write, he likes nature and flowers very much.
Our Ola is already after three immunoglobulin infusions. At this point, the doctors and we see some improvement in the motor skills and also in the cognitive aspect. The therapy is working, and Ola will receive further infusions in September. We are optimistic and hope that the treatment will bring further benefits. In addition, further diagnostics is being done for her, she takes medications and supplements - everything to improve her health as much as possible. Thank you very much because all of this is possible thanks to you <3

Przemysław and Justyna, parents

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For our foreign Friends.

Dear Friends!

We have started immunoglobulin infusions! Thanks to you it became possible! There are plans for at least 5 more. We still carry out medical consultations and conduct some specialist medical tests to make the treatment as effective as possible (among others, we found that our Aleksandra (Ola) has celiac disease and histamine intolerance, which requires a restrictive diet).

In the meantime, our Ola grew and gained weight, which affected the number of immunoglobulins needed. The price of the drug has also increased. Therefore, we are asking for further support - we want to secure funds for all planned infusions. We will be grateful for every penny that will help us with this.

For Your Big Hearts, for the fact that we were able to go to Gdansk for the first infusions, for words of encouragement and support, and for all actions aimed at helping our Daughter, THANK YOU ALL VERY MUCH! 

Ola's storie:

Our daughter Aleksandra (Ola) suffers from a rare illness – PANDAS. Till 2nd birthday she grew up typically, however then she went through some serious infections which were a trigger for PANDAS inflammation.

Currently each other sickness/infection causes her body’s immune defense system to attack her own brain and give development regressions as a result.

The best and most efficient treatment for her are immunoglobulin infusions now. Unfortunately, they are not refunded by the national healthcare system and the cost of such a treatment is out of our financial capability.

The diagnostics, consultations and medications our daughter had taken so far have taken enormous amounts of money. That’s why we ask for Your help for our daughter to allow her to grow up normally like other healthy children.

Przemek and Justyna – Ola’s parents