Team Danetti

At this time we have decided to start a 
Go fund me fundraiser for various medical needs for our daughter, Isabella. For years I have been sharing her story with friends and family on Facebook.  We have found ourselves 
far from out of the woods with our girls health.Isabella has been diagnosed with amplified musculoskeletal pain  syndrome.As well as POTS disease. She has had a steady fever on and off throughout the day for five weeks she has suffered painAll up all over her body,almost daily. Her hair has been coming out for a long time. To make sure of these diagnosis she has seen and had second opinions with Pain Management ,Cardiology as well as Rhumetology at all children’s Johns Hopkins and Tampa. To add to her stress level, she has Bursitis of the hip and can’t take the med as nephrology will not allow.   We are so appreciative and grateful that the team meets  in the board room before and after all diagnostic and physical exams. They sit with Tommy,myself and Isabella and we create a game plan. The game plan this far is medication, physical therapy aquatic therapy, acupuncture massages as well as equestrian therapy. In addition to what I have just told you over the last two months Isabella has had a colonoscopy,constant tests and MRI/ MRE as her kidney disease has become very aggressive. She  now has cysts in her liver as well as in and all over her kidneys. Specialists have been brought in from Florida and CHOPSS in Philadelphia to confirm and  Guide us on her next step. We received a phone call today that at this time, the  liver doctors are saying she is to be monitored every six months. yearly MRI/MRE to keep an eye on the situation. We were told today that she does not need a transplant of her liver at this time.With that said I am very happy with Isabella‘s rheumatologist taking care of her immune system and her autoimmune dysfunctions.Isabella will be seeing her nephrologist in the following weeks to go over a game plan and figure out why this gene is becoming so aggressive. Is it time for a kidney transplant. Tommy  and I have a great many things on our plate. We are in constant travel with all of Isabella specialists all over the state and out of the state. This decision has been 
taken lightly.  Not all of her treatments are covered under our insurance.  The gas and 
traveling is crippling.  I’ve been able to open a medical account for Isabella at our credit union from my husbands job.   My husband is going on 40 days in a row at work. He works out at  the gym every other day before work. He has managed to lower his BMI to begin the process of possible donation to our daughter. I couldn’t be more proud of him.   
  This is our life! And our child’s body is fighting itself.  All donations will be going to medical bills, treatments for Belle as well transportation. Gas and tolls.  She is asking for a bike she can ride. She’s been unable to ride the bike we bought for her. She hurts to much from it.  She’s going to need a specialized bike. She wants to try and ride with friends again.   My hero
will be finishing the school year with two classes online. She needs to have room for all these treatments. Get as strong as she can get. 
  I will update periodically as I have always 
done. Belle is not a fan of social media... but she does like checking my Facebook.
  #teamdanetti
#ADPKDWONTSTOPME
#POTSWONTSTOPME
#AMPSWONTSTOPME
#ASTHMAWONTSTOPME
#POLYCYSTICLIVERWONTSTOPME
A note from my girl.... Don’t worry about my mental health... #ilovemytherapist #youshouldhaveonetoo