Always Alessandra Awaiting Our Miracle Friends, family, and loving community, many of you have heard or read the story about my niece Alessandra Frances Marinelli. Here I am once again sharing our little ahhhhmazing girl, the toughest 2 1/2-year-old, the little lion fighter, lion cub, cheeky changa, little butter ball, peanut ball of love, nuggets of hope, and the list goes on and on. Since Alessandra’s birth, our entire family has been affected by her health. It has been one wild ride of emotional ups and downs, a roller coaster of dark times, highs/lows (lowest of the lows) and everything in between. This journey has been a long one and we want nothing more than to keep our journey full of faith, hope, and continued research. My brother David and his wife Rachel have been living at Nemours Children’s Hospital in Orlando, FL since September 15, 2024. We are at 11 months now and it just seems impossible this has been our reality. But it is. For those that are just here learning, Alessandra Frances was born with an extremely rare disease (RCDP.} - (Rhizomelic chondrodysplasia punctata). Worldwide, there are about 100 cases. Unfortunately, there is not enough data to help support these beautiful children at a high level and no cure has been identified yet. Yet, that’s the key, we will never give up, we will keep hope alive and believe that one day a cure or a drug will be found to help all RCDP kids in any way. In due time, we, and I mean all the (miracle workers) relentlessly work on finding that glimmer of hope that will add to these children’s quality and quantity of life. Rachel and David’s options are limited, and with no hospitals close to where they live, they are exhausted by the extreme measures and delicacy of Alessandra’s health care and needs. During the past 11 months, they have given the ultimate sacrifice as parents. They have been bedside every step of the way, being unbelievable advocates for my niece. They have poured their blood, sweat, and tears into Alessandra’s healthcare. And most importantly, their unconditional love for her. Alessandra has had numerous surgeries; such as cataract surgery, g-tube surgery for food intake/eating, laparoscopy (stomach) surgery {that saved her life}, spinal stenosis, and most recently a tracheostomy – in March/April 2024. She will now be on a permanent ventilator and David and Rachel will undergo the proper medical training for when Alessandra makes her way back home. Again, they have experienced severe developments and episodes in Alessandra’s health these past few months that have ripped David’s and Rachel’s hearts apart. In March/April 2024 they almost lost Alessandra multiple times in a 3/4-week span, (Cardiac Arrest, Resuscitation, Respiratory Failure, Lungs collapsing, 4 chest tubes, life support, and a Nitric Oxide Machine), bringing her back to life. This little fierce warrior refuses to lose and has shown time and time again the will and want to live. Alessandra’s infectious smile, sweet personality, and warm heart lights up our life, our soul, and our spirit. She truly is our little amazing angel. During these hardships my brother and his wife have been the ultimate caregivers, supporting Alessandra’s every need. Unfortunately, on top of Alessandra’s health situation, the unthinkable happened and David lost his job in early May of 2024. A job he had been thriving, enjoying and secure at. It has been another brutal blow to them. Rachel, being the sole caregiver to Alessandra hasn’t been able to work and my brother has been the stable provider for their family. They have come face to face with the fear of being unable to provide sufficiently and fear the future stresses of living this extremely complicated lifestyle. They have no more income coming in to pay for travel, expenses, mortgage, and all the unsupported medical bills. The train has hit them hard. It has been crucial on them to endure the pressures of daily life. The struggle and the mental part of it alone has been traumatic. All the uncertainty, the difficulty gathering thoughts, the anxiousness, PTSD, the emotional trauma, it has all been the most challenging time of their lives. They are running out of options to continue to care for Alessandra’s health and it’s become unbearable. There is hope for a clinical trial that could be on the horizon, but they need the time to sustain Alessandra’s medical care and keep her healthy. There is a supplement called Plasmalogens that RCDP kids don’t create in their bodies. In a nutshell, all humans need these plasmalogens to function normally. It’s the main cause/crux of Alessandra’s health and unfortunately, Alessandra’s body doesn’t reproduce these plasmalogens. These clinical trials are based on developing plasmalogen replacement therapeutics. They refuse to ever give up on Alessandra. They finally and truly are defeated. It has taken a toll for them to come to terms with asking for help to stay afloat. So, any small donation or gift of love would mean the world to our family. Please consider reading about Alessandra’s journey, researching RCDP, and donating to her family so they can have her back home and provide her with all the medical support she needs. From the bottom of our hearts, we’re grateful for your consideration and beyond humbled by your kindness and most importantly, prayers. They have used their funds towards Alessandra’s care that so many have already graciously contributed to, and we are eternally grateful. We hope this will add some positivity to lives, spread love, and bring true love to the forefront of this world. If anyone would like to follow Alessandra’s journey and the inspiration that she gives all, please follow her Facebook page at - Always Alessandra. Link to follow Alessandra's story of life: https://www.facebook.com/jodiannjohnston30/ This will bring hope and awareness to all children suffering from incurable diseases, fighting the fight, and dreaming of a future. We thank you all endlessly to the moon and back. Xo
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