My princess needs help

Hello

I am addressing families both near and far. Families that do not know me or my daughter. People that have a little compassion. We as a family - Whanau (Maori word for family) have always United together as one for every situation that comes our way. This once I must humbly ask family, friends, extended family and friends and people I have never met for help.

All parents biggest wish is that their children outlive them. My daughter has a very rare condition that has placed me in the situation of having to play Russian roulette with her life and unfortunately the odds are stacked quite heavily against us.

I would be lying if I said this situation was not playing heavily on my heart and mental well being. At the moment it is a scary waiting game until surgeons can put together a very large team of surgeons from different fields and their colleagues and additional assistants. Meanwhile my daughter is living on a tightrope that could fall away beneath her at anytime.

To date she has been in and out of hospital many times in the short period since we have known about her condition. Each time it appears worse with teeth falling out and her bleeding quite severely.

Her main surgeon has been extremely transparent with the situation and all the possible outcomes. It brings tears to my eyes writing this and thinking about why my precious angel has been dealt this hand.

She has previously had two lots of surgery without helping. Her now surgery is LIFE THREATENING! My only alternative option is to say no to the surgery and live each and every day, the rest of our life with the possibility of my precious daughter bleeding and having to watch, hoping that they can stop the bleeding. As it gets worse the danger of not stopping the bleeding in time increases.

What as a parent would you do? How as a parent would you feel? Each day I now wake up, look forward to seeing my daughter smile and think I now have a much better understanding of empathy then ever before in my life. So many thoughts and emotions must be going through her mind. In New. Zealand we have a saying “Kia Kaha” stay strong. How do you as a parent say this to your child while inside you are struggling with the situation. How much does my daughter understand apart from she can see her own mother hurting. Daily I wipe all emotion as you would tears from your eyes and start each day on a positive note, pouring as much love as I can onto my daughter. I love my daughter and cannot imagine life without her.

Please help me.

Every donation will be happily accepted. One dollar, fifty cents, five cents, anything would be greatly appreciated.

What am I attempting to fund!

Travel to and from appointments and surgery. This is a four hour trip often requiring us to stay the night close to the hospital since we are situated in a rural town that does not have the hospital services required. Many appointments are needed before the big surgery. There is fuel costs, additional food costs and possibly additional accommodation costs.

We have applied for a grant for a possible experimental drug (MEK inhibitor or BRAF inhibitor trametinib) that possibly could help. If we cannot get the grant, we are looking at $1000 per month with no guarantee of success.

My father lives in Australia. My daughter and I would love for him to come back to New Zealand before the life threatening surgery. Unfortunately with Covid-19 all the borders are closed and flights from Western Australia are lot more expensive with many airline’s favouring Business class travel over normal domestic travel. On top of this, if my father cannot get an exception, he is looking at costs on either border for isolation. Then my father is possibly looking at struggling to get back into Western Australia because of the restrictions on the number of people allowed to fly back is capped at only 500 per week. If he becomes stranded, he will have no income and bills that still need to be paid.

Lastly and most importantly to myself, I want to give my daughter as many uplifting experiences as possible. To live her life to the fullest as the date of her life threatening surgery gets closer. Fun and enjoyment so that we can share as many special moments together.

As you can see, I need help all round. Honestly I never thought I would be in this situation and I never imagined that we would have a family situation that would be bigger than what we as a family could not overcome. My father and my brothers along with their partners have been very supportive, I give thanks for this support.

But now I must step outside our family and seek help where ever I can get it.

Please could you donate a little to help us. As I said before, anything is appreciated,

Thank you to those that read this, if you cannot help, please share it with as many people as you can

We as a family appreciate any support offered and any suggestions to help make this young girls life happier at this time.