LOOKING FORWARD TO TODAY
Danielle Catharina Lyons, known as “Dani,” is a four year old little girl who lives each day to the fullest and enjoys each moment. She is a carefree child who looks for the fun in each day. Dani has a twin sister, Paige, and an older brother named Brandon. Dani’s mother, Andréa, shares her experience with Dani’s recent Neurofibromatosis Type One (NF1) diagnosis and how it has affected her family.
Earlier this year, Dani visited a dermatologist at BC Children’s Hospital for an unrelated issue. It was then that the doctor noticed café-au-lait spots, bone deformities on her legs, a larger head circumference and some developmental delays as compared to her twin sister. The doctor suggested that they explore the possibility that she may have NF1 and that she be seen by an ophthalmologist to see if there were any eye abnormalities that are associated with NF1. At their visit to the ophthalmologist on April 23, 2013, it was discovered that Dani has Lisch nodules on both of her optic nerves and the unfortunate diagnosis of NF1 was confirmed. From that moment, the Lyons’ family would be forever changed.
Although the news was shocking and upsetting to Dani’s mother Andréa, within 24 hours she jumped in with both feet ready to face the situation head on. “When I found out – I was really fairly quick coming to terms with it. As a parent all you want to do is take away their pain and you would gladly exchange places with your child so they do not have to feel one iota of suffering,” explains Andréa. “However, when I learned about NF1 and learned that there was no cure, I was quick to decide that I was going to learn all I could, be an advocate for raising funds, and help mitigate any symptoms for her the best I could.” Andréa quickly learned about the NF foundations in the States and was in contact with research centers at BC Children’s Hospital. She even signed up for a marathon and immediately started an awareness campaign and fundraising.
At the time of this interview, Andréa has fundraised just over $7,200 and has two more fundraisers planned for the near future. All of the funds raised will go directly to the BCNF.
DANI ISN’T CONCERNED PAST THE END OF THE WEEK. SHE IS JUST LOOKING FORWARD TO TODAY – WHAT FUN SHE WILL HAVE AND HOW HAPPY SHE CAN BE IN THE MOMENT
“We have reached out to our local community including fire fighters and friends, and they have come back in spades with their generosity,“ tells Andréa. Andréa is quite familiar with the local fire hall, due to her involvement with Search and Rescue and her career in emergency management. After being featured in her local newspaper to highlight an upcoming fundraising event, she received a call from her local fire hall. "They expressed their sadness when learning of Dani's condition, and asked that I bring Dani down to the fire hall for something." When they arrived, all three of Andréa’s children were treated to fire truck tours and even got to pull the fire truck out of the hall with the lights on. “Then the crew on shift presented Dani with a card (inside was a $500 cheque) and a stuffed Dalmatian dog with a fire hat on – which hasn’t left her side.”
Another fundraising contributor is Andréa’s staff at BC Hydro where Andréa was a profiled employee for a few weeks and was able to promote the cause. Through this, she managed to raise approximately $750. A local grocery chain called Thrifty Foods has also been a huge support. Through their generosity, approximately $3,000 has been raised at fundraising events.
When asked about the challenges their family has faced since Dani’s diagnosis, Andréa explains how hard it is to wait for doctors’ appointments and not knowing what to expect for her child’s future. “It’s like watching a storm come in off the ocean… you don’t know if it’s going to hit the shore or just sit out on the water,” Andréa shares. “Right now we are waiting to see if there is another wave coming at us and getting ready to batten down the hatches in case the storm does rage.”
Like all mothers, Andréa has hopes and dreams for her daughter. “When I first learned of the diagnosis, my heart stopped for a moment and I wondered if I would ever be able to see my little girl walk down the aisle and get married – funny how I went straight to that life event, but nevertheless I did.” Andréa shares that in the short amount of time since Dani’s diagnosis, her daughter has taught her a significant lesson: to live each day to the fullest and be happy in the moment. “Dani isn’t concerned past the end of the week. She is just looking forward to today – what fun she will have and how happy she can be in the moment,” shares Andréa. “I hope for her to continue to live in the moment and take each day as it comes in her determined little way.” Dani has already expressed interest in becoming a doctor and likes to “treat” everyone in the house. “She has a little doctor’s kit and puts Band-Aids on her siblings.”
Andréa hopes that Dani finds her passion in life and follows it with every fibre of her being, despite the inevitable challenges she will face from NF.