Help for Sweet Gianna "Dolly" & the Radice Family

This is the last thing we ever expected to do but our family needs help. Many of you know my son & daughter in law Frank & Michelle and their beautiful family. After a tough journey, they were blessed with twins Jaxson & Gianna. Michelle and Frank lost 2 pregnancies in their journey to have a 4th child but despite their devastation they did not give up and Michelle found an out of the box doctor whose thinking helped them to get pregnant naturally after they were told by several specialists that it was impossible. A holistic nutritionist said something during their journey that really stuck with us: "those souls will find their way back to you when the time is right." It is because of this that they consider Jaxson & Gianna their miracle babies - their angels that made their way back. After an early scare and a tough pregnancy and delivery, they were relieved to finally bring their babies home, get back to their life and family and enjoy their beautiful babies.

But, early on, Michelle noticed that things were different with Gianna than they were with the other kids - many times she was dismissed and told that Gianna was "just a preemie". At around 6 months, Jaxson started to hit milestones like rolling, crawling, etc. and Gianna was not. After a long year of endless doctor visits, hospital stays and testing, we now know that Gianna has a rare genetic mutation syndrome that caused her brain to not form correctly which is in turn causing her delays. This is not something that was inherited but basically a mistake in mapping that occurred during early prenatal development. The diagnosing neurologist very brashly told Frank and Michelle over the phone: "she may never walk or talk and most kids are on a feeding tube by now." Unfortunately, there is not much known about this diagnosis and the general consensus is that only Gianna will be able to show us what she will be able to do and the best thing for her is therapy, therapy and more therapy. Determined to not let her diagnosis define her prognosis, Gianna has been in therapy 6 days a week since 6 months old, some days twice per day. While progress is slow, she IS making progress and even though she is still very behind, she has come so far which gives us so much more hope and faith than we started with. Above all she is happy and engaged with her family. Michelle has said from early on that the only thing keeping her sane and moving forward is that Gianna smiles. The silver lining is that so far, Gianna does not have many of the other devastating features that can go along with her diagnosis such as drug resistant seizures, heart or kidney anomalies or brain tumors/cancer and we are all considering ourselves blessed. If you know Michelle, she is someone that has never accepted a bad circumstance and always says there's "always one more thing you can do". Michelle has scoured research, reached out to many different specialists and is trying to find that one more thing for Gianna to give her the best possible quality of life. At this point, Michelle and Frank have registered Gianna for two therapy intensives (multiple therapy sessions per day for a period of a few weeks). These places are out of state, costly and not covered by health insurance. In addition, they have been in contact with a top researcher and physician to make use of umbilical cord blood and tissue stem cells via stem cell therapy infusions. Fortunately, they banked these stem cells for all 5 kids with the intention to one day help Frank's Type 1 Diabetes or to help any of the kids should they also develop it. While nothing can change Gianna's genetic disease or brain structure, the hope is that it will improve the mechanisms of the brain and muscles and how they relate to motor planning and function. It is really quite intricate and hard to explain and understand but when I tell you that they have left no stone unturned, believe me. Again, this procedure is out of pocket and out of state. The total of just these 2 therapies and stem cell therapy is approximately $50,000 not including travel, lodging, and meals for those traveling and the kids still at home. It is likely that these intensives will be a large part of their lives moving forward but the cost is a major factor. There are also many other therapies that Michelle is learning about every day such as biofeedback, hyperbaric oxygen therapy, etc. and we have only begun to scratch the surface. What we know is that there is a lot of research based on the theory of neuroplasticity and the brain's ability to basically rewire itself in early childhood.

Although the hope is for the best possible outcome, we do not know what the future holds, if Gianna will eventually need adaptive equipment or specialized care which is why we really don't know what our true need is right now. To make matters worse, Frank was laid off in November and while he did receive a severance package, they were forced to deplete their retirement account to cover the cost of COBRA health insurance and basic living expenses. Thank goodness, Frank started a new position at the end of January and Michelle has been working even harder with her real estate career because there is nothing she wants more than to give sweet Gianna everything she needs to live her best possible life. Not to mention that these two parents are sure to make it to every single one of their older kids' events and games. Frank has continued to coach and they have made sure that really nothing has changed for the other kids. To say that I am in awe of all they are juggling is an understatement.

We are coming to all of you for help - our friends, family and community. Some of you know this beautiful family through my many conversations and posts and some of you know them through the community and things they are involved in with all of their kids; football, baseball, basketball, class parents, etc. They are the type of people that will do anything to help anyone and now they need help. Even though they have fought me on this for months, it has become overwhelmingly clear that they can not do this alone. If you can donate, we appreciate it more than you will ever know. If you can't donate, please share this and lift this family up in prayers. Please ask your employers and corporate contacts or share any info about charitable foundations, fundraising opportunities, anything you can think of. If you would like to donate directly, please reach out to me for details. One of the things that I have always admired is the wonderful community that they belong to and I pray that we can all come together to help them in their time of need because no one should have to fight alone for their child. For Gianna (God is gracious) Grace (favor or blessing).