Monthly Archives: August 2017

Meet Emma Mckee, a very special girl

Emma McKee is the face of this year’s Piggy Bank Appeal which officially kicks off on Friday, and she and her family represent more than 900 families across Victoria who are supported by Very Special Kids.

Ten-year-old Emma is a very cheeky girl who loves swimming, giving cuddles and playing on the swings, but she also requires 24 hour care and assistance for all her basic needs.

Emma had her first seizure at only seven weeks of age and was later diagnosed with Lennox-Gastaut Syndrome, a rare type of uncontrolled epilepsy.

Emma unfortunately never reached any usual milestones growing up, and has suffered major developmental delays due to her condition. She is non-verbal, is fed through a tube and can have up to 40 different types of seizures per day.

Emma’s mum Jenny has become her full-time carer and father Rodney and 14-year-old brother Jarrod do all they can to help.

“Every time she has a seizure it’s doing so much damage to her, but no one can tell us how she feels or what it’s really doing to her” explains her mother Jenny.

Although Emma is fairly unresponsive, she has unique ways of getting her point across.

Jenny says that whenever she doesn’t like anything she is extremely communicative and will often cry, luckily for her family, Emma never cries when she comes to stay at the Very Special Kids hospice.

“It’s a home environment, and completely different to a hospital. The staff there take a lot of notes and ensure they do everything the way that she’s used to having it done, it’s been great, and such a relief” says Jenny.

Although no one can tell Emma’s family what is in store for her future, and the prognosis for Lennox Gastaut Syndrome is disheartening, her family is thankful for every day they have with their beautiful little girl.

Very Special Kids will continue to support Emma McKee, as well as her family. To help us do that please text ‘PIGGY’ to 0455 021 021 to donate to the Piggy Bank Appeal. Or you can donate online.

A walk that means the world

17-year-old Ethan Connolly-Kelly takes pride in being a self-determined young man. Ethan has been attending Mates Weekends at Very Special Kids for several years now, with his best friend Ryan.

Ethan’s father Justin see’s the weekends as an invaluable activity for the boys, which is why he and a group of his friends will be participating in the Upstream Challenge this year, for both his son Ethan and Very Special Kids as a whole, on the 11^th of November.

The challenge involves a 20 km or 50 km walk along the Yarra River and will raise money to fund the Mates Weekends program at Very Special Kids.

The weekends are designed to bring children together who have high cognitive ability, which are facing similar physical challenges, and ensure they have experiences that they normally wouldn’t have the opportunity to.

Whilst Ethan is very adamant about being independent, he unfortunately however, has conditions that have made it exceptionally hard for him.

Ethan was born with hypopituitarism and hypoglycaemia, which meant he was susceptible to having adrenal crisis if he became unwell. In 2003 when he was just three-years-old this resulted in a stroke, and since then he has suffered from epilepsy, vision impairment, mobility disabilities and intellectual delays.

It’s only in the last 6 months that Ethan has been able to come out of his wheelchair for short walks, due to extensive rehabilitation and physiotherapy, and the unwavering dedication of his family.

“Despite the things that hold him back he is exceptionally outgoing, resilient and determined” explains his father Justin, who lives with Ethan and his grandparents in Seaford.

After Ethan’s stroke he was in an induced coma and ended up being in the children’s hospital for 64 days. After this intense time Justin was put in contact with Very Special Kids, and found access to the Hospice for respite exceptionally helpful. “There was nothing out there for children who had suffered strokes, I was a young parent and I felt extremely isolated dealing with this. Having Very Special Kids there created a safety net and gave us a sense of connection, which is extremely vital to both of our well-beings” said Justin.

Since then Very Special Kids has been a constant support to the Kelly family, and Justin explains that “it’s difficult to put in to words the joy that Very Special Kids has brought to our lives, there were things that I couldn’t give my son, but they were able to provide, and it has been amazing.”

Mates Weekends are a great chance for teenagers with limiting conditions to socialise without their parents for a change, but still have the support of carers when they need. It’s a chance for these teens to socialise, feel liberated, and experience things they wouldn’t usually, with others who are in similar situations.

“Mates Weekends gives Ethan a confidence that flows through to other areas of his life. He gets a chance to share normal, exciting stories, and feel more like other teenage boys” said Justin.

If you would like to help provide invaluable experiences for kids like Ethan, please head here to register for the Upstream Challenge 2017.

“We are truly thankful for Very Special Kids, the experience has been invaluable. We look forward to trying to give something back to them at the Upstream Challenge.”

Discounting your experience

Kevin Carlin, a Family Support Practitioner at Very Special Kids, shares some insightful words around grief and the implications of comparing one’s own situations to another.

Sometimes, when I am listening to bereaved parents, they will make the comment that there are other people worse off than they are. That comment has always surprised me when, for a parent, having a child die, must be the worst experience they could possibly have to endure in life. I have often reflected on why parents sometimes make this comment.

Clearly there are people who have experienced multiple, unimaginable losses in life. However, grief experiences cannot be compared and each parent’s experience is unique to them. It is what the loss means to each individual that matters. Perhaps the comment is a way that parents endeavour to comfort or console themselves in the belief that there are people worse off. It is a noble comment in the light of what a bereaved parent is going through.

As noble as this may be it is important that a grieving parent does not feel pressure to discount or devalue their grief and what they are actually experiencing.

By minimising the depth of their own grief, parents might be protecting the feelings of others around them. This can be socially rewarding as many people, including family and friends, can find it hard to sit and listen to another person talk about the pain associated with loss. However, there is a substantial price to pay for this socially rewarded behaviour, and that is emotional isolation.

Allowing themselves to share their grief openly and honestly with someone whom they feel is truly present for them can provide a degree of relief for grieving parents. This person might be a friend, a counsellor, an acquaintance whom they may have recently met, or it may take place in a support group setting.

If you are feeling isolated in your grief there are counsellors available at Very Special Kids. Either speak with your Family Support Practitioner or call 9804 6200 and ask to speak to the duty worker.

A weekend to remember and reflect

Contradicting the natural cycle of life, the death of a child can be the most profound loss for a family. The recent Very Special Kids Bereaved Parent Weekend held in Templestowe gave parents the opportunity to explore the impact of their child’s death in a safe and affirming space.

17 parents supported by Very Special Kids came together for a weekend that included therapeutic activities and the sharing of special memories.

Family Support Practitioner Kevin said the supportive environment helped parents bond with one another.

“The parents, most of whom did not know each other prior to the weekend, bonded so well, were so respectful and supportive of one another.

For the parents it was a therapeutic, nurturing and sacred experience as they shared memories of their children, the pain they felt and continue to feel since their passing.”

The weekend enabled parents to take time out to focus on their deceased child/children in a space that was uninterrupted by the routines and demands of everyday life.

It is hoped that by the conclusion of the weekend of reflection and sharing, parents would have learnt some strategies to help them as they move forward in their bereavement.

The Very Special Kids Bereavement Program builds continuing links with bereaved families through a range of activities including Bereaved Parent Weekends and group meetings, Creative Memories craft sessions, Bereaved Sibling Days and the annual Remembrance Day ceremony.