A new home for Willow

 

 

Meet Willow.

 

Or @littlewillowwarrior as she is affectionately known to her family and friends.

 

Willow is our 1 in 116 million miracle who is kicking goals every day with the help of a huge team of specialists and her loving and dedicated family.

 

When Willow was born, she spent the first few days of her life in the special care unit with hypoglycaemia. However, it wasn’t until a few weeks later that Willow’s parents really began to worry.

 

 

After months of...

 

• feeding problems

• difficulty gaining weight

• severe gag problems

• a high arch roof of her mouth

• tongue, lip AND check ties

• delays in gross motor

• leading to global developmental delay

• hypotonia

• concerns about her low set ears

• her eyesight and the fact her left eye turned in (she wears glasses in an attempt to improve this)

• an early diagnosis of plagiocephaly (an asymmetrical head shape) which saw Willow wear a helmet for 23 hours a day for 6months;

 

... her loving parents sought out appointments with specialists who conducted numerous tests, ultrasounds, EEGS and MRI’s.

 

Willow was just 10months old when she was diagnosed with Tetrasomy 18p. An extremely rare chromosonal disorder.

 

There are currently only about 600 children worldwide, which makes the chance of diagnosis a 1 in 116 million chance. 

 

With so little research and information around this very rare chromosomal disorder, her family are literally living day to day, waiting and wondering what will happen next.

 

 

Willow (who has recently turned 3-years-old) is currently unable to walk unaided; she can not talk and has a feeding tube which is used 3x a day for feeds. Willow has also recently begun having multiple seizures a day, which is only one of the long list of characteristics that Willow has due to Tetrasomy 18p.

 

As you can imagine, she is entirely dependent on an adult carer at all times for all of her basic needs.

 

 

At this point, Willow and her family live in a home that has become unsuitable for her and her long-term needs.

 

Willow needs a home with

 

• One level – her current house is up 14stairs to the front door, and requires physically carrying Willow and her pram/walker to and from the car everyday.

 

• Flat block of land so Willow doesn’t have to navigate stairs and split levels to access outdoor areas

 

• An Open floor plan with enough space for her to turn a walker around (360degrees)

 

• A shower she can easily walk in and out of with her walker

 

• Storage for all of her equipment (Croc Walker, PEG feeding equipment, Stringray pram, Lecky squiggle hi-Lo chair, Climbing frames and blocks, Floor chair and table, Juni chair and table plus more)

 

• Ideally, a house with two main bedrooms and ensuites so that Willow can be cared for independently and respectfully as she gets older. It is unlikely that Willow will ever be independent enough to move out of home.

 

• Two living spaces – allows respite for Willow’s big brother and sister and/or for her parents to have some alone time together

 

• 4 bedrooms; Willow’s current home is only 3 bedrooms and Willow’s sister and brother (8 and 7years old) currently share a room which is not sustainable long term

 

The particular location of the house is also paramount as it needs to be;

 

• Close to families and friends for support and caregiving

 

• Have easy access to the best medical care available, i.e. being able to rush to the nearest Hospital or the Children's Hosptial (this has happened on numerous occasions already)

 

• Close to the local Special School – where Willow will most likely be heading.

 

• Close to Public transport - Willow's older siblings will need to become independent earlier than planned so easy access to trains and buses is ideal.

 

 

As Willow continues to delight her family and celebrate birthdays, the worry of what may be is always in the back of everyone's mind.

 

They don’t know what tomorrow or next year will bring for Willow and their family. But having a functional home that respects the needs of not only Willow but their entire family is more than they can ask for right now.

 

 

And this is why we are asking for your donation today.

 

To help with the costs towards getting...

 

A forever home… for Willow.

 

 

 

 

Any donation will be greatly appreciated by Willow's family. Whether it be the price of one glass of wine or one cup of coffee. Together, it has the capacity to change a young girl's life.

 

All funds raised will go directly towards the cost of a new house, either helping with a deposit or for modifications to the home to make it Willow friendly. 

 

You can follow Willow's journey @littlewillowwarrior over on Instagram

 

And you can read more about Tetrasomy 18p here