Brooke and Georgia Willisson like Dora the Explorer. They love to play ball, and computer games, but one of their favourite activities is colouring or painting together. They often share a piece of loose leaf paper. Georgia carefully draws using a crayon clutched between her thumb and index finger like every Kindergarten student. Brooke, however, picks up her crayon and scribbles away with her feet unabated.
Brooke, who began pre-school at Kootenay Christian Academy this year, has Bilateral PFFD (Proximal Femeral Focal Deficiency), a malformation in fetal development that caused her to be born without arms and many of the bones in her legs. PFFD is not hereditary, and its cause is unknown. She doesn't have a femur or tibia, and has many bones in her ankles missing, causing her tiny feet to splay outwards. Most PFFD children are born without kneecaps, and Brooke's knees are up where are hips would be normally.
"At birth we were really scared on how society would look at her, but she's such a happy-go-lucky kid that we don't worry about her anymore," said her father Craig.
What you notice about Brooke first isn't her so-called disability. It's her smile, her normalcy, her wonderful, playful attitude. She boogies around her house without missing a beat, like nothing could stop her -- but there is something stopping Brooke. Something her loving family never expected.
A local contractor (who wishes to remain anonymous) wanted to keep his workers busy and tuned up in the off season, so he searched for a way to give back to his community. He heard about the Willisson family, and their need for an addition on their small trailer home, and immediately got on the phone.
"It was totally out of the blue," says Brooke's mom, Rachel. "So many people have been praying about this, because they know it's something that we really, desperately need."
The workers got into place, local businesses donated supplies, and friends of the family started rallying through the Facebook group An Angel With No Wings to plan meals and refreshments for the construction crew. Things were just about the break ground, when the City of Cranbrook put a kibosh on activities, saying the new addition would put the Willisson home within 16 feet of their neighbour. Homes in Cranbrook must be a minimum of 19 feet. The construction that was supposed to start on February 6 was put on hold.
Letters were sent out to neighbours, and the family were summoned to council to address the situation. Brooke's father Craig says their neighbours and landlord are all in favour, and many will happily be marching into council with Brooke.
"It's so frustrating when you're so fed up with living like this, and you have such a light at the end of the tunnel," Rachel says.
The 924 sq-ft. home was great for Rachel and Craig before they had kids, but as Brooke's needs change, the house will have to as well.
"It's not at all compatible for anyone who has a disability," she says. "We're literally tripping over each other. It's just not a liveable space."
As Brooke grows, she will require a wheelchair, which will not fit into their home. The wheelchair is being funded through her occupational therapy, and will have a power lift so that Brooke can reach counters. The family would even be able to have a dining room, and the power chair would allow Brooke to eat with them. The family will also be burdened with outfitting their minivan to transport Brooke's wheelchair when the time comes.
The new addition would house her physiotherapy equipment that will help her learn how to do normal everyday things like stairs. It will be built so that ramps can be added later. To keep the addition within the city's specifications, it would have to be seven feet wide, which Rachel says just isn't enough.
"A seven foot wide addition would be a hallway," she says.
The family has looked into moving, but right now there are no homes on the market that would work, and they have been denied a mortgage. A new home would have to be the right size without being too big, so that Brooke can get places without getting too tired, and would have to be open concept. Without the addition, the family will be stuck in their too-small home.
"There's nothing out there right now that's suitable for her," Craig says. "We also have to look into the future for her."
Because of her disability, Brooke was given a 60 per cent chance of ever walking - but the little girl beat those odds last year when she hopped to her feet.
"And now she hasn't stopped," says Craig as Brooke sprints back and forth across the family living room.
Sometimes Brooke feels pain if she walks too much. Over Christmas, Brooke triumphantly walked the length of the Tamarack Mall - only to be exhausted afterwards. Rachel says that on big days like that, she will massage Brooke's feet and limbs.
"Sometimes she'll comes to me and say 'Mommy, my feet need to be charged,'" Rachel smiles.
The family visits the Alberta Children's Hospital two or three times a year, where they have a wonderful team of specialists. Brooke is especially excited for her next trip, because she will get to see the Calgary Zoo's new penguin exhibit. The family tries to keep things positive and have a great sense of humour when it comes to Brooke's disability, which is why they liken her to the cuddly, waddling birds. If you ask Brooke, though, her face brightens and says she loves penguins because they lay eggs.
The family has used the War Amps CHAMP program to connect with other people with PFFD. Rachel says through those connections, Brooke has been able to meet people just like her. One of those people, is a 30 year old woman living in Toronto who is very similar to Brooke. She grew to be about three foot 11 inches, which Rachel says is about how tall Brooke will end up.
"It's so frustrating when God tries to give you a gift and you have to wait," Rachel says.
The family will be appearing at City Hall on Monday, February 13, and Rachel says they aren't holding back when they get there. Brooke herself will be leading the procession of neighbours, friends and family into the chambers.
"We're bringing in the big guns."
It's a curious thing, Brooke being projected to be just over three feet when she grows up; because that is precisely the distance that is denying her the space she needs to get there happily.










