Monthly Archives: April 2015

Securing the anchor for the Evans family

15-year-old Jack Evans is a huge Hawthorn supporter, loves exploring Melbourne, playing with his younger brothers and talking circles around Very Special Kids Hospice nurses. However, when Jack was first born, his family were told he wouldn’t live past two years old.

Spinal Muscular Atrophy is a genetic disease that meant Jack was very sick as an infant and still requires care 24 hours a day to meet his needs. Jack is in a wheelchair for posture and mobility, is tube-fed, and needs assistance with breathing.

Jack had his first stay at Very Special Kids Hospice when he was two-years-old and since then has stayed at the hospice more than 50 times. This allows the Evans family to do things they normally couldn’t do, including getting a full night’s sleep.

Mum Lisa Evans says their relationship with Very Special Kids goes beyond the practical support they get through respite care at the hospice.

“The staff at Very Special Kids are an anchor for us. In 2014 Jack was very sick and we thought he would need to go to the hospice for end-of-life care. The staff were very understanding. They get the highs and the lows and have known Jack since he was a child,” she said.

“For Jack going to Very Special Kids is his home away from home. He feels very safe there – it’s a sanctuary for him.”

Lisa Evans will be participating in the 24 Hour Treadmill Challenge, as a part of the Epic Pharmacy team, to raise money for children in 24 hour care. Sponsor a runner at vsktreadmill.org.au.

The meaning of Mother’s Day

As a parent of William and Hamish, who both have the same extremely rare genetic condition, Mother’s Day holds special meaning for Natalie Watson and her husband Brian.

“Mother’s Day is a day that we remember our beautiful mums and show appreciation for all the little things they do for others with love and unconditionally. It’s a day we give ourselves permission to take a break from doing and just enjoy the moments and relationships we have with our children.

“It’s a day of mixed emotions for me, as are most days, but being a mum is both the best job and the toughest job in the world. In so many ways my two gorgeous boys have changed my life and nothing makes me prouder than being their mum,” Natalie said.

Seven-year-old William and five-year-old Hamish have an extremely rare genetic condition. The brothers are two of only six cases in Australia and 60 reported cases worldwide.

Natalie explained that the condition, Adenylosuccinate Lyase (AdsL) Deficiency, has caused severe progressive neurological damage to both boys.

“William and Hamish are both physically, visually and intellectually disabled. They require wheelchairs for mobility and suffer from daily uncontrolled seizure episodes.

“Brian and I are their arms, legs and voice. We help them with every aspect of daily living, from dressing to feeding, monitoring for seizures and turning them over through the night to make them more comfortable,” she said.

As AdsL Deficiency is so rare, it is hard to have a definitive prognosis. Natalie said that what they know for sure is that the condition is progressing, as both boys’ seizures have increased.

“We have been unsuccessful at controlling them completely with medication and diet modifications. We can’t plan too far ahead, it becomes very overwhelming and heartbreaking. Every day we wish for them to have a better quality of life – Brian and I get busy to make that happen. It can be a real emotional roller coaster and it takes its toll on both of us,” she said.

Very Special Kids has provided emotional and physical support to the Watsons, after the family was referred from the Royal Children’s Hospital. Natalie said that Very Special Kids helps the family with respite care at the children’s hospice and emotional assistance through their local Family Support Worker.

“I know the boys can go to Very Special Kids Hospice and be provided with high quality care. I can relax because I know that they are okay. I know that the nursing staff will make the right decision for the best care of the boys and we are only a phone call away.

“The hospice has a fantastic communal area where all the kids come together, so it’s comforting to know that William and Hamish will be included in all the daily activities, as well as have times for quiet and rest. My boys love the amazing sensory room with music and calming lights.

“The staff are friendly and caring and its very professional run – it feels like it’s their home away from home, which is really comforting for us to know,” she said.

Natalie said that the respite Very Special Kids offers gives her and Brian “a break from being carers and time out to find ourselves again. It gives us all some breathing space. We love travel and have a passion for running. Respite is so important for everyone involved in caring for someone; you have to make it a priority to take that break and recharge”.

William and Hamish have stayed at the hospice while Brian and Natalie have been able to travel and run in some amazing places.

“There is no other respite service like the hospice out there for us. Brian’s family lives in the UK and he wouldn’t get to see his family if it wasn’t for Very Special Kids, as the boys can’t travel on a plane.

“Running for a great therapy for us, as our fitness and attitude towards life is something we can control and in a time when we have no control of our boy’s condition.

“Thanks to Very Special Kids minding our boys, we have been to the Blue Mountains for the Northface 100 and more recently New Zealand and completed an ultra-marathon which was amazing. I really don’t think I could cope without knowing we have somewhere like Very Special Kids to support our family,“ she said.

The Watson family lives in country Victoria, with limited services for hospice respite. Natalie said that she has also benefited from meeting other families from Bendigo who are in a similar situation through the activities organised by Marianne, the local Family Support Worker.

“I have been to morning teas, parent lunches, pamper days and the family Christmas party. There are few families I have connected with and we support each other. I really look forward to catching up with the other parents and having a chance to talk about our similar experiences,” she said.

Q&A with Very Special Kids Hospice nurse Jodie Lapthorne

In the lead up to the 24 Hour Treadmill Challenge from 22 to 23 May we interviewed Jodie Lapthorne, a Very Special Kids Hospice nurse, about what inspires her and the advice she has for 24 Hour Treadmill Challenge participants.

Q: Tell us about your role
A: My role involves many things from giving out medications to giving out cuddles. It is a big responsibility to be caring for someone else’s child and often they cannot speak for themselves. I have to be especially vigilant in attending to each child’s needs both physically and emotionally while they are in my care.

Q: Why do you think access to the hospice is important?
A: I have great respect for the families we support. They work 24/7 with no overtime and no routine breaks. Very Special Kids provide that break through our respite service. We provide the light at the end of the tunnel after a torrid time of illness, hospitalisation, family turmoil or tragedy. We allow the other siblings to simply have time alone with mum and dad, or mum and dad to have time as husband and wife, or time alone for no reason at all except to sleep! These simple things that most of us take for granted, can be life changing and life saving.

Q: What inspires you to work at Very Special Kids?
A: The opportunity to make a real tangible difference to lives of whole families. I love seeing families grow along the way. However, at times the journey we travel with families is a sad one. Very Special Kids provides the opportunity for the whole family to be together at the end of their child’s life with the support of nursing staff in our home-like environment. As difficult as this is, I find it a privilege to be part of. Each child and their family leaves their mark on my life forever.

Q: Do you have any advice for 24 Hour Treadmill Challenge participants?
A: By fundraising to support the hospice you help us to continue this support for families. Very Special Kids recognises that for a child to be cared for, the whole family must be cared for. This is what we do so well.
So keep training and keep fundraising so that you can be a positive influence on their lives too!

From 22 to 23 May more than 1,000 participants will run the 24 Hour Treadmill Challenge to raise funds for children in 24 hour care at Very Special Kids Hospice. To sponsor a runner visit vsktreadmill.org.au.

Hospice Easter holidays in photos

Children staying at Very Special Kids Hospice in the Easter holidays enjoyed a range of activities including a trip to the children’s farm, a circus on wheels and planting flowers.

An Easter grotto.

Painting with The Art Cabriolet therapist Svetlana.

A trip to Bundoora Park Children’s Farm.

Mesmerised by colourful ribbons with Isi from Ready Set Play Kids – Circus on Wheels.

Getting hands dirty planting Autumn Hyacinth bulbs to take home.

Magic in the park for North West families

13 families enjoyed a fun-filled day out at Werribee Mansion Park for the Very Special Kids North West Family Day in the April school holidays.

The families, who have children with life-threatening conditions, scoured the grounds in an Easter egg hunt, were wowed by a magician, got creative with arts and crafts and parents relaxed with massages from an on-site masseuse.

Very Special Kids Family Support Worker Kevin Carlin said the event enabled families to meet new friends in similar situations.

“It was a chance to meet other parents with special needs children and take away a little of the sense of isolation that can be experienced,” he said.

The event was made possible through the help of volunteers and Parks Victoria.

Raising respite for the Rogers

15-year-old Sarah Rogers is a happy kid that enjoys music, going to school and playing with her brother and sister, but she also requires constant care for her basic needs.

Sarah has Cerebral Palsy, Spastic Quadriplegia, Epilepsy, Scoliosis and a vision impairment. She is unable to walk or talk, or eat by herself, and requires a BiPAP machine to regulate her breathing.

With Sarah often in and out of hospital, mum Lorelle Rogers says that the family focusses on enjoying each day.

“You never know with Sarah, when she could be in hospital. We just enjoy the time we have. She could have years left in her, but we don’t know,” said Lorelle.

The Rogers family turned to Very Special Kids when Sarah was 11, for respite care at Very Special Kids Hospice and emotional support.

Lorelle said that having access to Very Special Kids Hospice makes everything easier.

“With Sarah’s deteriorating health we have not been able to access other respite care services; she needs nurse’s care.

“I don’t have to worry when she’s at the hospice. She’s safe and she knows the staff.

“It allows me to have one on one time with our other children. It can be hard to find that time,” she said.

Siblings celebrate “being me”

Siblings, and bereaved siblings, of children with life-threatening conditions, enjoyed games, crafts and meeting new friends at a special day all about them.

Three Very Special Kids Sibling Days were held in the April school holidays, each with the theme “It’s All About Me”, encouraging children to take a day to focus on their own needs.

Kids scurried around the Very Special Kids grounds in Malvern participating in a scavenger hunt including relays, yoga, planting seeds, juicing oranges and making friendship bracelets.

A highlight was lessons from Taekwon-Do Masters Scott T Cole and and Steve Kara from Pilsung Elite Taekwon-Do Academy.

The Very Special Kids Sibling Support Program was created to address the impact on children, of having a brother or sister with a life-threatening condition. The activity-based Sibling Days help kids explore their emotions, enhance their self-esteem and meet peers.