It’s one thing for a parent to hear the news that their child won’t live past one.
It’s another to beat the odds, but have no idea how long that twist of fate will last.
For Ryan and Brittany Miller, whose nine-year-old daughter Brooke was given a terminal diagnosis at five weeks old, life is a constant tight-rope.
Brooke’s condition, Aicardi syndrome, is a rare disorder that subjects her to multiple seizures a day, and kills most sufferers within a few months.
That was on top of her other conditions, which doctors diagnosed after her first seizures when she was a little over a month old: cerebral palsy, a heart condition called Wolf Parkinson White Disease, and epilepsy.
Almost a decade on, Brooke, of Queen Creek, Arizona, has surpassed everyone’s expectations, and her parents say they learn from her every day.
But they need to take each day as it comes, and have struggled with stigma, funny stares, and socializing.
Brooke, who has defied the odds to survive despite Aicardi syndrome, is incredibly smiley and happy
When Brooke was born her eye hadn’t developed correctly and she is now blind in her right eye
The Millers have had to deal with discrimination from friends and the public
Brittany, 29, and Ryan, 45, have three girls together: Juliette, 14, Audrey, 12, and Brooke.
When Brittany found out she was pregnant with their third child in February 2009 there weren’t any signs of complications, and the pregnancy went as well as her others.
‘All my pregnancies have been pretty easy and enjoyable. There were no indications of what was to come,’ Brittany said.
‘She was my biggest baby at 8lb 6oz but the only worry really was her one eye wasn’t opening normally which turned out to be smaller due to not growing correctly during pregnancy.’
It meant Brooke would be blind in her right eye, which was the most life-impacting diagnosis any of their girls had ever had.
But weeks later, it became clear that it was merely a symptom of a much more complex and devastating cluster of conditions.
Brooke and her mother Brittany have an incredibly strong relationship
Brittany said the family take one day at a time
The Miller family have had to develop ‘thick skin’ to deal with the public
Brittany, a special needs care specialist, and Ryan, a forensics law enforcer, were with their girls at a Christmas party when five-months-old Brooke suddenly went into a seizure.
They rushed her into Phoenix Children’s Hospital.
After having a CT scan, spinal tap and an MRI the neurologist brought us the terrible news.
‘At the time he was the only doctor in Arizona to have patients with the very rare genetic condition called Aicardi syndrome,’ Brittany said.
‘He came to us with tears in his eyes and told us the news that our daughter had the same condition.
‘He told us that Aicardi is essentially a terminal diagnosis, there is no cure and most children do not reach adulthood, but in her condition she wouldn’t make it past her first birthday.
‘We chose not to focus on this reality, but it was there then as it is now and it’s real.’
Brook might not make it into adulthood. She also has a heart condition, epilepsy and cerebral palsy
Julitte and Audrey have been incredible sisters to Brooke
Thanks to Brooke’s medical team at Phoenix Children’s Hospital, they have managed to keep her condition at bay.
The social aspect was something they never expected to face.
‘Unfortunately, there will always be the ignorant population that discriminates,’ Brittany said.
‘Honestly, the staring and the judgement are real but over the years we have had to learn to have thick skin.
‘When she was on her Make A Wish trip in 2012 she felt she was being judged for being allowed to go to the front of the line from the comments people made.
‘We have been denied wheelchair accessible seating. We have been denied seating at restaurants and have dealt with harsh stares and words her whole life.
‘We have also been pushed out of some our social circles includes friends, church events and birthday parties.
‘There are the loyal friends we do have and for those we are thankful that they make the efforts to include our family and be aware of Brookie’s needs and limitations.’
Brittany has learned a great deal from her daughter and continues to each day.
‘I love all my girls equally and differently,’ she said.
‘Brooke requires total care and depends on us for her every need such as love, feeding, mobility, changing and everything else. I have a fierce protective love for her. I’ve also learned you don’t need language to communicate.
‘She’s the happiest and smiley-est girl around. It’s a privilege to be her mom, as it is all of my children.’
Although Brooke has a tough life she is always smiling
Brittany added: ‘I could never truly describe what Brooke has done for me, but in a nutshell, she has taught me to be brave.
‘To rely on strength, we didn’t know we possessed. To learn new skills, learn a whole new way of life and learn that it is ok. She has also taught me what true unconditional love is.
‘I always tell families that being a special needs medical mom is like belonging the exclusive club you never wanted to be a part of, but now cannot live without.
‘I am not saying this journey is easy, there are many tears, many late nights, a lot of stress. But the miracles and tender mercies of raising our fragile daughter are so worth it.
‘We have come a long way as a family. You can do this because you love your kids. Life can be a wild ride but being a special needs parent opens your world up to some things so unique and precious you will fight with all of you have to keep it.’