Cystic fibrosis and a wish for Disney

Hi, my name is Alison and I am the mum to 8-year-old Mila. Mila is diagnosed with 2 types of Cystic Fibrosis. She has it predominantly in her pancreas and as well in her lungs. Right now mila's lungs are coping well but she has a lot of trouble with her pancreas especially as this is a rare form of cystic fibrosis and treatment is still limited and unknown. She is part of some new and exciting clinical trials including a worldwide trial for children under the care of Randwick Children's Hospital and Dr Keith Ooi. We learned of Mila's condition after she experienced several very horrible occurrences of Pancreatitis without any known reason. These started when she was almost 7. After her 2 occurrence, they decided to do some more specialised testing of her DNA and that's when it was discovered she had CF in her Pancreas. When she gets pancreatitis she will end up in the hospital on nil by mouth for a week or sometimes more. As a precaution, they followed up with a test for her lungs which we didn't think she had as she wasn't very symptomatic however that unfortunately came back positive as well. Although her lungs are not too bad at this stage and they are not treating her with any medications, she does have to do nightly rehabilitation of back thumping and using a bubble blower to keep her lungs clear. We have done several different treatment options, one where she was unable to eat any food that had more than 3g of fat per 100g which means nothing to most but when you start reading the back of every packet of food, you soon realise that things outside fruit and veg are mostly too high. She was also unable to eat any dairy as it was too high in fat and had to switch to a dairy-free diet, After almost 12 months and no improvement they removed that diet and put her on a daily laxative diet where she takes double the adult dose of 2 different types of laxatives as bowel blockages seem to be the biggest issue in causing her to get pancreatitis. This has helped a lot and see less frequent onsets of pancreatitis but not completely. Unfortunately, every time Mila gets unwell she ends up with double or single plural embolisms (collapsed lungs/ partial collapses) as her pancreas can not process the fluids she is given so it gets absorbed by her lungs or heart. We have been told that the pain of pancreatitis is around equivalent to that of a massive heart attack and so an attack will usually see Mila on a fentanyl drip. Its extremely difficult to see your child at 8 years old experience such immense and excruciating pain that such intense forms of pain killer are given and still don't take away the pain 100%

In the past 18 months since her diagnosis, Mila has been hospitalised 8 times with pancreatitis, a staph infection and glandular fever. Her last pancreatitis was extremely frightening as they believed she had become septic and narrowly avoided ICU and an induced Coma. She needed so many antibiotics and fluids that her lungs just couldn't cope and that saw her with 2 plural effusions and weeks more than originally needed in the hospital. She has missed her birthday, almost Christmas (released Christmas Eve), easter and other events including an extreme amount of school. She was also in the class of kindergarten that started the same year covid hit and so along with this, she has had a lot of time off school.

Mila is no stranger to pain and suffering and having a complicated 8 years of life. Mila was diagnosed with a cyst in her brain at age 4 after suffering debilitating headaches and sight problems. She was put under general anesthetic and was found to have a 7mm cyst in the centre of her brain that is inoperable and unable to even have a biopsy taken. The only Dr that would be equipped to even attempt the surgery would be Dr Teo however as we know he no longer is allowed to operate in Australia. We live with the hope and prayer that by the MRI and scans that it appears to be Malignant and just fluid filled however as its size is over 5mm it does make her symptomatic and causes her headaches, sight problems and sleep issues. She has had to have her tonsils, adenoids removed and grommets placed in as she has suffered countless ear infections and burst eardrums. Mila also has high-functioning autism, ADHD and dyslexia. So this makes it just that much harder for her to have so much time off school as she falls behind easily. We are lucky to have such an amazing school that takes the time to work with her. Mila is also awaiting surgery on her sinuses as this is again another side effect of the cystic fibrosis and so she doesn't know how to swim and cannot do swimming as a sport as we would like and is recommended as it helps strengthen her lungs, but because her sinuses can't handle the water well and even going for a swim in summer will often see her come down with a cold or congestion which then moves to her lungs, this is not an option at present time. Mila has to go on an intense course of antibiotics every time she gets the common cold as her lungs will produce excess mucus that she can not cough up like a "normal" child.

We were encouraged by her lovely nurses at Randwick to apply to the Make a wish foundation for her wish however she was declined for 2 main reasons unfortunately but fairly. 1. They don't do out of country wishes and 2. She is not what would be considered "terminal enough". We certainly understand and do not think it's unfair that this is the case as there are so many children waiting for their wish that need it more urgently than she does. However, we would also like to be able to give Mila her wish before she becomes too unwell to enjoy it or to go as she would not be able to get travel insurance that would cover her pre-existing condition. We know that over time her lungs will become worse and worse till she needs a lung transplant however lucky enough that she was diagnosed early enough that she can still live life mostly on a normal level as most CF patients are not diagnosed until their teens or early 20's and are in more urgent need of a transplant.

So after a long back and forth, back and forth discussion and conversations with numerous people both known to us and not known to use (especially within our community) we were encouraged to try a Go-Fund-Me page, as well as some fundraising and other options as they become available. We as a family have been trying to save for this wish for a while now and although we save enough got spending money, or the airline tickets and accommodation, we can never seem to get halfway there or something in life comes about that sees our savings needed for other costs of living things and with the cost of living so extremely high and other issues such as mental health issues within the family, we have just not been able to reach the goal or in all reality come even close to making it a wish that she so much would love, appreciate and remember forever. With all this aside it is paramount to add that Mila is a child that is so full of life, love and laughter. Her personality is bigger than that of 100 humans and her heart is sometimes too full for her little mind to handle. She never lets her illness get her down (well mostly) and usually just accepts that there are kids out there that have been dealt a worse hand than her and she accepts that this is hers. we let her know she has every right to be mad and allow her the space to be upset or annoyed but emphasise the need to have the moment and then dust ourselves off and get on with everyday life and she often does this a million times better than I do. Sometimes I find myself feeling sorry for myself and sorry for her. sorry for the fact that she has a life expectancy of half that of a healthy child and she will often comfort me and tell me things will be ok. We do try hard not to let her see us feel bad or dwell but we are human.

Mila has wanted nothing more in life than to go to Disneyland and America more than anything since she was 2 years old. She would cry and get so upset if mickey mouse clubhouse was not on and when she was sad it would always put a smile on her face. She loves anything Disney but mostly just the big man himself and to go and experience Disneyland in all its glory would be something she could hold close to her heart and in her memories for the rest of her life and especially when her luck is down and she is going through a hard time. We know that there are so many kids and humans out there doing it so much harder than she is and that's why it was so hard for us to do this. We don't really ask anyone for anything and we are both hardworking honest tax paying adults, howver we also want what's best for our little girl and this is one thing we can do so we have placed our egos on the shelf and we have decided to ask that if you are in the position to donate, no matter the amount that we are forever grateful to everyone and each and every cent.

Thank you for taking the time to read our long story. We hope you are well and if you can not able to help, we just ask for your kind prayers and well wishes.