By Karim Bataineh
There are certain events or moments that forever alter how we experience our lives. These events can appear as positive milestones like the birth of your child or meeting the love of your life, but other events are memorable for the opposite reasons. Our mother’s diagnosis with ALS in 2004 falls in the latter category. The news put our family under enormous stress that tested the absolute limits of what our family bonds are made. We as a family have been living with ALS for 12 years and through faith and perseverance, we managed to mold a beautiful and positive state of living out of such a negative experience. This was not always the case, as each one of us had to dig deep within ourselves to try and make sense of the news. It was not easy, and there were many emotions and angry feelings we had to overcome in order to reach the place we are in now, a place of tranquility and happiness.
We feel privileged to have gotten this far, and we hope our story could help other families going through ALS. Because if there’s one thing we learned, it is that living with ALS is a group effort, a family effort, and the more we all pitch in, the easier it gets for our loved ones going through the hardest battle of all. We truly believe that the love between us is the single most crucial element in our battle against ALS.
Those familiar with ALS understand there is no cure, at least not now. Therefore our first motivation for supporting ALS organizations like The ALS Association, is to fund the necessary research needed to find a cure. The second and perhaps more pertinent driving force for our giving back is to provide patients with the means to obtain necessary medical care, as well as technological tools needed to maintain their quality of life. The physical symptoms of ALS are inevitable, but there’s a lot that can be done for patients and their families. Having the financial support to be able to afford home care and communication devices (like Eye Gaze), are life savers, literally. The ability for patients to communicate and express themselves is the single most important tool they have in fighting ALS.
Yes, we would say our mother’s determination and will to live is the catalyst that has allowed us to collectively survive and thrive with this ALS experience. There are also a whole host of other factors and important people that you all are getting to meet through her blog which made it all possible. However another factor which we are extremely fortunate and grateful for is the privileged position we are in to afford a level of care that most patients, be they ALS patients or other diseases, simply can not afford. This is why we feel compelled to support organizations that provide assistive care and support for families with ALS patients, from physical support with equipment and technology, to social and emotional support.
We support associations by participating in fundraisers and donating to ones whose mission aligns with our purpose. This year Karim, as he has in past years, will participate in The Greater Philadelphia Walk to Defeat ALS as part of Team Loofy. We hope to one day host a walk here in Jordan to support the many ALS families in the country who badly need the care. Please read more of our mother’s story on our blog and join us for the walk at www.greaterphiladelphiawalktodefeatals.org