We hope you’ve had a wonderful Christmas. I admit that we did not have the strength to organize Christmas this year, and being away from the family in this situation did not improve our mood. However, we were pleasantly surprised by two invitations. One for Polish Christmas Eve, another for English Christmas dinner in an international group in Boxing Day (the second day of holidays). People around us were wonderful, understanding and caring. Talks at the table, making greetings, delicious Polish food and British traditions let us forget about everyday difficulties.
There is a lot going on here, the fight is still going on and sometimes we do not have the strength to share it, so I’m sorry for the long break between the posts. We still need to gather strength for the next days, overcome many problems. Over the past few months, we’ve been on an emotional downside, but then there have been several smaller and larger miracles. We got support from the side we did not expect.
Emigration is not easy, and being a sick immigrant is a real challenge. We had to learn to live in a new reality. Living with a chronic, rare disease means that you must accept a certain weakness of the body and find a new way to enjoy the gift of life.
Although life is difficult for us now, it would be much more difficult without your support. We are grateful for any help on our difficult journey. A trip that we did not plan and to which we were not prepared. We are grateful to all who supported us in any way.
Thank you for all your donations to Alicia`s fundraising Siepomaga Foundation and GoFundMe. It has been more than half a year since we started collecting funds for the treatment of Alicja with your help. Thanks to more than five thousand people in April and May 2018, a large sum of money was raised on the Siepomaga Foundation. Also, GoFundme fundraising successful and very helpful for us.
We hope that in January 2019 we will be able to do some groundbreaking medical tests at the London clinic and start Alicia`s treatment.
As we shared updates in previous blog posts, Alicia’s surgery was halted due to infection. In addition, new complications arose and doctors are unconcerned about the operation. Since the diagnosis at the clinic in March 2018 in Barcelona, Alicia has had many new tests, meetings with 10 different specialists, many of them specialise in rare diseases. On the basis of appointments and conducted specialist studies, it has already been determined that Alicia also suffers from EDS (Ehlers Danlos’ Syndrome) and POTS (Postural tachycardia syndrome). Unfortunately, this is not the end…
What’s next in 2019?
I am grateful that we have come this far. Sometimes I feel that we have a double life. These are the days when Alicia feels better, and those bad days full of pain, fear and suffering, but we believe further.
In a moment the next year will start. We believe that a breakthrough for us. We wish you a wonderful 2019, dreams come true and stay healthy!