This month marks the launch of our first ever Shooting Star Space Race – a collective mission to get our virtual rocket to moon, round the moon and return home, whilst raising money for Shooting Star Children’s Hospices.
Supporters can help our rocket shoot for the moon by walking, running, cycling, and scooting as many miles as they can to help our mission be a success.
Our out of this world team are blasting through the Earth miles we need achieve our supersonic task, with one family having a particularly special reason they are taking part in this cosmic challenge. Mum Debbie share’s her family’s story.
It was during late pregnancy when parents Debbie and James were told there had been abnormalities detected in their baby boy’s brain. “Prognosis wasn’t good and the specialist who arranged the MRI suspected he wouldn’t be capable of breathing on his own, and therefore, not survive birth, and if he did, we were told he would only be with us for a very short time,” explains mum Debbie.
“It was at this point the hospital put us in contact with Shooting Star Children’s Hospices and arranged for us to have a visit. Having never visited a children’s hospice before we were uncertain about what to expect and quite nervous at the prospect of visiting,” says Debbie. “However, upon arrival it became clear to us it was far from what we had imagined. It was incredibly welcoming and friendly – a positive place to be. So, we decided that after the birth we would transfer to the hospice to receive their support and guidance in what we knew would be a difficult time.
“Gibson arrived four days after his due date kicking and screaming, making it very apparent he was a little fighter! We remained together at the hospital, then after four days, we travelled to the hospice as a family. During this time the hospice were in constant contact with the hospital to ensure we were ready for our arrival,” continues Debbie. “We stayed at the hospice for three weeks. The staff were such a huge support, they helped us capture so many happy memories and we would have been lost without their medical knowledge. They offered so much emotional support and were completely understanding during what was a very difficult time, not only for us as parents, but also for our families and friends.”
During the family’s stay it became clear that Gibson had very different plans to what had been originally expected, and the family were told they could take him home. “Whilst delighted, this was also a very daunting prospect as his care needs are far from typical. The staff at the hospice spent so much time with us teaching us how to carry out all the different aspects of Gibson’s care ensuring we felt comfortable and confident to return home with relevant care plans in place,” says Debbie.
“The support didn’t stop there, we received respite stays throughout the year and when he was at the hospice Gibson enjoyed all that was offer, including the amazing hydrotherapy pool, the sensory room, complimentary therapies, and special events the hospice arranged.
“The hospice allows you to meet other families in similar situations, which is a great benefit as sometimes our situation can feel isolating, so it’s nice to be able to talk to others with similar experiences.
“Shooting Star Children’s Hospices work closely with Paediatric palliative care clinics to ensure the very best care can be given to the children they support. Gibson’s condition, Joubert syndrome, is a very rare genetic condition which many doctors and hospitals haven’t come across so there is very little knowledge on how to deal with it. The hospice and consultants are much more familiar with such complex conditions and become a ‘go to’ due to their experience in such cases, not only for us as parents, but offering support to other medical professionals involved in Gibson’s care.
Debbie says, “The knowledge, support, level of care, time, compassion and experience the staff at the hospice provide was invaluable to our family and not something offered by other services. Whilst, of course due to the nature of hospices, there are families who are going through very sad times, the hospice is a very happy, accepting, positive place – a place full of friendly faces and happy children making memories to last a lifetime.”
It was just after Gibson’s second birthday when he was discharged from palliative care. “This was of course amazing news, however it meant we were to leave the service of Shooting Star Children’s Hospices. It was very difficult to say goodbye to such an incredible service and remarkable team of people who had supported us – we will forever have fond memories of our time spent at the hospice. I decided to take on the Space Race to help raise funds for them, as the service provided by Shooting Star Children’s Hospices is irreplaceable to those receiving their support. As Gibson is still currently shielding, he hasn’t been able to come out with me for all my Space Race walks, but has thoroughly enjoyed those he’s been on so far and whatever the weather has in store for us for the rest of March, it won’t stop any of the fundraising efforts!
“As a family who has benefitted from support from Shooting Star Children’s Hospices, I can’t express how hugely thankful I am and how important it is for the service to continue.”
This is mission control – we can confirm the Shooting Star Space Race mission has successfully reached its lunar destination ahead of schedule so we are calling for new recruits to help our brand-new mission to cover the distance it would take to orbit and return to our hospice base.
Using our special space to Earth mile formula this means an overall target of 16,337 Earth miles. By joining our mission you’ll be helping ensure Shooting Star Children’s Hospices can continue to support families, just like galactic Gibson’s.