Me, Gediminas, and my wife, Zaneta, were classmates, we started going out in 2006 and quickly fell in love and we continue to enjoy our love today. We carefully planned our future – graduated from universities, started our careers in accounting and logistics, got married, found a cozy place to start our family and prepared for our biggest plan – our first baby.
Gabriele, our long awaited little bundle of joy, was born on March 27th, 2018. We could not have been more pleased to finally meet her! She was such a delightful little one, until after about 3 months we noticed changes in her left shin. It started to deform, realign and we found a tumour. After having an X-ray at our local hospital, we were immediately referred Vilnius University Children’s Hospital, where doctors diagnosed our daughter with a rare and scary disease – Congenital pseudarthrosis of the tibia and fibula (CPT and CPF). Briefly about CPT and CPF - bone deforms and suddenly breaks and due to pseudoarthrosis it does not achieve union without a complicated surgery. Even today, failure to obtain bone union is frequent and the functional prognosis is mediocre because of residual deformities, joint stiffness and remaining length inequalities. Already, Gabriele’s fibula is broken and tibia is deformed in parts.
This congenital disease is very rare in the world. In Lithuania, doctors only come across it once every couple of years. Various specialists and doctors from Vilnius University Children’s Hospital confirmed that there is not sufficient expertise and technology to successfully treat this disease in Lithuania. Lithuanian doctors do attempt treatment, however without sufficient technology this results in 6-10 very difficult operations and often leads to leg amputation.
After learning this, we spent numerous sleepless nights researching the disease and the best possible treatment for it. That’s how we found Paley Orthopedic & Spine Institute at St. Mary‘s Medical Center, located in Florida (USA).
Head of the centre Dr. Dror Paley is a well-recognised specialist in treating pseudarthrosis with successful outcomes. As shown by many expert endorsements and successful case studies. Dr. Dror Paley is confident he can treat Gabriele’s leg using “XUNION” method, when she is 1 year old. However, the cost of treatment (with all the necessary injections, casts, brace and operation) is $100,000 (89.000 EUR).
The length of treatment in West Palm Beach, Florida is approx. 14 weeks (it is advised to spend all this time near the clinic for operations, adjustments and necessary injections). Also, with Gabriele growing she will need additional 2-3 smaller operations to replace telescopic rods, which continue to support her leg whilst she grows.
Having come face to face with such a challenge, we very sadly had to admit that it is beyond our means to fund the whole of the sum required for treatment. We are not used to asking for help, and it is very painful for us to realise that this is outside of our control. However, we will fight for Gabriele to have a painless and carefree childhood (to run, to play sport and to do the normal things that children do). We will do anything and everything and will not leave any stone unturned for that to happen. With biggest humility and hope we are asking for your help to fund Gabriele’s leg operation.
You are welcome to visit Gabriele's charity and support fund's Facebook profile: https://www.facebook.com/GabrielesParamosFondas/
You can donate via PayPal using this link: paypal.me/GabrielesParamosFond
Thank you VERY much!
Gabriele, Zaneta and Gediminas