My Story:

Hannah Capil (Invercargill)

From Invercargill

Introducing Hannah - a stunning 13 year old patient member from Invercargill

Hannah Capil was a healthy girl of nine years old when she came to her parents with a cough. What unravelled was a journey that the family is still on.

Hannah was first admitted to Christchurch hospital for 38 days in June 2010, as doctors first suspected that Hannah may have cancer. Many tests later she had been screened for a wide range of possible medical conditions, "She had been through every medical team you can think of with various medical complications - from respiratory, pain, ear-nose-&-throat, opthalmology, haematology, immunology and gastrology."

The first diagnosis of an immune deficiency was determined whilst at Christchurch hospital, and confirmed when sent to Auckland Starship hospital to be assessed by the paediatric Immunology specialist team. Hannah joined IDFNZ Kids Foundation when she was diagnosed with a PID in September 2010

Hannah was finally diagnosed with an extremely rare combined immune deficiency condition. This rare genetic condition meant that her immune system could not fight infection. This particular PID condition is so rare Hannah is believed to be the only patient affected in the whole of Australia and New Zealand at the present time.

Having identified the medical condition Hannah's trials were not over as treatment posed new challenges for her. IDFNZ Kids Foundation was initially able to help with much needed information, contact with support staff and a practical medical alert bracelet as treatment options were discussed. The Capil family were also linked with other PID member families in the South Island, though Hannah's condition was in many ways unique.

Initial treatment involved monthly Intravenous plasma infusions (IVIG) administered at her local hospital. Unfortunately Hannah found the treatment painful and suffered severe side effects as well as problems with vein access. A home treatment of sub cutaneous plasma infusions on a 3 weekly basis was also trialled using SCIG pumps donated by IDFNZ Kids Foundation. This treatment was also found to be problematic for Hannah so another approach was pursued.

In 2013 Hannah underwent bone marrow transplant with her younger sister Emma being her courageous donor.

 BMT involves intensive treatment - Hannah was in isolation on the BMT ward for almost 9  months. With Mum and Dad by her side Hannah had wonderful support-however she really missed her brother, sister, grandparents and friends who were such a long way off  in Invercargill. With the help of IDFNZ KIDS Foundation  her brother and sister were able to visit  to cheer her up.

Hannah and her parents have kindly agreed to share her BMT journey to help other PID families undergoing this life saving treatment in future. Surrounded by mainly cancer patients in the BMT unit, mother Lisa was grateful to be able to chat to another KIDS Foundation member who had previously experienced a successful BMT. By keeping a diary she is keen to share the sort of details that she knows will benefit others.

(Read mother Lisa's diary  2013/2014 for  Hannah's  transplant journey -one of the bravest girls ever. And most recent update for 2015 )

Hannah is now back home  recuperating - life is still very fragile but Hannah is determined to have some Fun and  "Give Back" to IDFNZ - visit her Give a Little page to read about her "Throw a Pie For PI challenge"