I'm struggling with the disease in front of my baby. Will you help me win?

A fight for health and life doesn’t always take place on a hospital ward. Trying to live as ‘normal life’ as it is currently possible I am fighting a battle against a serious health condition that is threatening to take away what I love the most. Oftentimes it takes a while to digest the news delivered by doctors and to gain the internal strength and courage to realise that we are at home in our own body and it is the disease itself that is the invader and a very unwelcome guest.

Agnieszka loves her life and she is determined to do whatever it takes to make it last as long as possible. First and for most she is a mother and not a patient, she is certainly not a victim. Agnieszka has more than one reason to live and she won’t let the condition take over the steering wheel.

First MS, now the tumor …

It had all started so inconspicuously, a mild leg paresis was where it all begun and what prompted Agnieszka to do medical test. Then, there were many tests, a lot of medical consultations that led to yet more tests. At some stage the likely causes pointed to the spine but it needed to be confirmed. Finally, the MRI scan unveiled the true cause – demyelinating changes in the brain and the very devastating diagnosis: Multiple Sclerosis.

A disease that is as much unpredictable as it is difficult to treat. In some cases those affected are soon send to a wheelchair whilst others are more lucky as the disease allows them to continue with their ‘normal’ life, to work and to look after their children. There and then Agnieszka decided to accept the MS diagnosis with a smile, not get frightened by it, however at the same time she knew she couldn’t totally ignore the intruder. After all, her then 2 years old son was waiting for her at home.  When a mother has to choose between being sick and being there for her child, the choice is clear …

Up until this very moment I had always seen myself in a role of a helper, never the one that needed to be helped. My nature has always been quite selfless. When presented with MS diagnosis I instinctively knew that a lot would depend on me, on how I face the disease, on my attitude towards it. Listening to what my inner voice was telling me I focused my energy on bringing up my son and the MS had to take the back seat. As much as it was possible, I didn’t allow MS to dictate how I live my life. 

This positive approach meant Agnieszka truly believed the worst was behind her. She got accepted onto the MS treatment program, she made some lifestyle changes, including the diet and the medications were bringing the desired results. A full-time mother with MS in the background became her life plan. Some years have passed, Agnieszka’s son Borys celebrated his 9th birthday and the regular scans kept confirming things were looking good, there didn’t seem to be a reason to worry. In December 2016 Agnieszka was in a car driving to attend one of the routine scans when suddenly her sight became slightly foggy in part of one eye.  At the time she had no clue that the reason was a serious one. Once again the scan diagnosed the problem and revealed the worst of possibilities – brain tumor, meningioma, 1.5cm in diameter, located in a part of the brain where the optic nerve runs. The tumor is pressing on the nerve affecting its function, deteriorating the vision and possibly leading to blindness.

Operation, disability, death?

The doctors debated long and hard over the possible treatment options and they finally decided that a brain surgery was the way forward. This sort of surgery is very dangerous, it offers no guarantees as far as possible neurological damages are concerned … if this happened the impact on quality of life would be substantial possibly dramatically changing the life Agnieszka put so much heart into creating.

A mother with MS and brain tumor sounds very concerning ineed. Agnieszka has enough inner strength to face also this disease however what is crucial here is choosing the best possible treatment option. Brain surgery is incredibly serious and dangerous act. The slightest of errors, even a millimeter off are likely to result in paralysis, neurological issues or even death. The risk seems too huge for someone

My son knows that I am ill, he knows the names of the conditions that I suffer from, understands that sometimes I simply need to take a rest. He is a very unique and quite incredible child who truly understands everything and is able to sense whenever there is something worrying happening with me. If I put myself at this huge risk, the operation poses, I will at the same time affect his life too. I am not able to imagine and I don’t want to imagine a day when I am not able to be fully present in Borys’s life.

The time is precious and timing is the key – brain tumor (meningioma) is growing as confirmed by the most recent MRI scan performed on the 12th of September this year. The expanding tumor affects my vision and the eyesight keeps deteriorating. Recent medical consultations informed us of a treatment that offers an alternative to the very risky surgery option. The ‘Proton therapy’ is a treatment offering 95% chance to eliminate the tumor without causing damage to the optic nerve. 

This is an incredibly costly treatment that has to be paid for in full before the treatment can commence. At this time would like to turn to our family, friends and people that can & may want to help and support our efforts to collect the required sum. I don’t want to turn to suffering and sadness, as it would only create bad memories for those close to my heart, those around me. I am a happy person, a very happy mother and wife who wants to be healthy and remain happy for myself and my family. Will you help me win this battle?