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Team Shan Histio Warrior Trust

Cause Description

Shan is a 18 year old Carlow student diagnosed with a rare form of an already rare disease Histiocytosis X which is classed as a rare autoimmune Cancer. Unfortunately as it is so rare, there are no specialists in this field in Ireland and few around the World.
There are however a Team of Histio researchers showing innovative treatments with excellent prognosis in Texas and currently a new trial commencing for 18+ years in the DANA Farber institute Boston MA which Shan may be suitable for when she turns 18 in July. Currently we have been following a chemo regime here in Ireland as set out by Dr. K Mc Clain of Texas Childrens hospital and will be making our third trip to the states in late sept/ early oct to commence further testing, operations and discuss different trials and options to get Shan well. She will also try a new protocol of chemotherapy and targeted drugs. This stay needs to be a minimum of 4 months at a cost of $527,000!!!! So we really need your help and support xx

Where Your Money Goes

Money donated will go towards costs associated with Shans illness for travel, expenses and to get Shan to the US for the best possible care. Our hope is to raise enough to get Shan back to Texas Childrens Hospital where there is an expert Histiocytosis Department headed by Dr. Kenneth Mc Clain offering advanced treatments, trials and information. We will also need to travel to Boston MA on a regular basis if Shan is a viable candidate for a current trial which has been running since 2014 with 81% of patients already in full remission. Histiocytosis X comes in many forms and Shan is in a rarer group having multi system with Skin (multiple locations) ear, pituitary and hypothalmus involvement causing many hormone issues including Diabetes insipidus (currently treated with desmopressin) and a need for growth hormone injections, cortisol and hormone replacement (following chemo) Shan is currently 6 months into her current chemo regime of 5 days cytarabine every 21 days for 12 months and is not responsive so will need further treatment. While this trust focuses primarily on funds needed for Shan we hope that along her journey through treatment and recovery that we can make people more aware and that we can help others faced with a similar diagnosis.

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Contact Us

Contact Details

Graiguecullen Carlow , Carlow, Carlow, Carlow, IRELAND