Just in case you’ve missed my busy Facebook page over the past few days, I’ll put the Television and Newspaper links up here.
My husband and I decided to go public (well, more public than this cosy little corner!) to find help for Hana.
Ten months after having her tumour removed, Hana is morbidly obese, this has occurred due to broken metabolic pathways in her brain after her tumour was removed in January. So far, no one in her care team has put forward a strategy/action plan to combat this condition – “Hypothalamic Obesity.” Her condition is rare and so we do not expect to find a World Expert here in Sydney or Australia (there is no research coming from here on that condition) however we do desire a specialist to ‘do their homework’ and perhaps consult with leading international experts in this field (so far, my husband and I have been doing this) before devising a treatment plan with us. So far we haven’t found anyone willing to do this. Waiting to see a new specialist can take four months – and consults are often focused around Hana’s complex hormone replacement requirements, since these are immediately life threatening and it seems that the Obesity is viewed as lower on the list of priorities.
Things are getting crucial. Hana’s physical disablement from her weight gain is severe. She has also developed sleep apnoea. She is Insulin Resistant and I therefore anticipate the development of Type 2 Diabetes in the next few months. It is also thought that she has a fatty liver.
I am losing my daughter little by little, every day.
We what need is a PLAN. We most likely need to try a couple of medications (we are advised that these probably won’t work/won’t help and will have undesirable side effects) then we need to start discussing Bariatric Surgery (lap banding, sleeve gastrectomy or the Vbloc). The media is helping us to get the message out there in hope that someone comes forward offering their help.
Sunday 12th October was a big day with Hana’s story making the front page of the Sunday Telegraph, Channel Ten news got in touch shortly after 9 a.m, came over to film at lunch ready for the evening news meanwhile the Daily Mail also requested an interview and photos Sunday afternoon. This is how they have helped us so far: