By Scott Thompson
MEET THE brave mother who was devastated when she was told her daughter’s condition meant she wouldn’t make it past ONE let alone live into adulthood but now at NINE-YEARS-OLD has surpassed everyone’s expectations – but she admits discrimination is real and that many friends have stopped inviting them to birthday parties.
Family support specialist for raising special needs children, Brittany Miller (29) and forensic federal law enforcer, Ryan Miller (45) from Queen Creek, Arizona, USA are parents to three girls, Juliette (14), Audrey (12) and Brooke (9) who was born with Aicardi syndrome which is a rare neurological syndrome to which doctors say children won’t survive childhood.
When Brittany found out she was pregnant with Brooke in February 2009 she felt elated and there weren’t any signs of complications. Brooke was born on November 10, 2009 and weighed 8lb 6oz.
The only thing they noticed at this time was one of Brooke’s eyes wouldn’t open, which turned out to be microphthalmia, where one eye doesn’t grow at the same rate as the other in utero.
At just five weeks old however, Brooke started having seizures and was rushed into Phoenix Children’s Hospital where, during the course of their investigations, Brooke had a CT scan, spinal tap and an MRI and subsequently found out something was terribly wrong.
After all this testing Brooke was diagnosed in December 2009 with Aicardi syndrome. The doctors said that although children with this condition can live out their childhood, she would be unlikely to make it past her first year.
“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 6 oz 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. This means she is now blind in her right eye.
“We’d only had her for five weeks and we were celebrating at a Christmas party when she suddenly went into a seizure and was rushed 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. 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.
“Brooke was also born with cerebral palsy, wolf Parkinson white disease which is a heart condition and epilepsy.
“In our Brooke’s case the doctors actually told us she wouldn’t make it past her first year, but thanks to her amazing medical team at Phoenix Children’s Hospital and lots of prayers, she’s doing so well despite everything going on for her.”
rittany speaks out about the discrimination she has received from the public because of her daughter’s condition. Also, sadly the Miller’s have been pushed out of some social circles and they have been left out of numerous friendships and social events.
“Unfortunately, there will always be the ignorant population that discriminates. Honestly, the staring and the judgement are real but over the years we have had to learn to have thick skin,” she continued.
“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. 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 smileyest girl around. It’s a privilege to be her mum, as it is all of my children,” she said.
“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”.
You can follow the Millers journey on Instagram