Proud foster mother Suzannah with Roald Dahl Nurse Lisa and Max (Image: RDMCC)
Two proud foster-parents have told how their son’s exuberant love of life in the face of severe disability has been a powerful inspiration to them.
Suzannah and Andy Goodchild say the challenges they face caring for their fostered son Max are matched only by the joy and “fizzy energy” he brings to their home.
Max is just ten and is unable to walk or talk because of his complex medical needs. He is registered blind and experiences epileptic seizures every day.
If he could speak, there is no way Max would tell a sad story, say his family.
Every day he shows them how much he loves life revelling in the sensations of sound, smell and touch.
Suzannah Goodchild and Roald Dahl Nurse Lisa Smith care for Max (Image: RDMCC)
Herbs in the garden provide his favourite scents and tactile objects such as Lego his favourite toys.
Max came to live with Suzannah, 54, a lecturer and now full-time foster mother, and Andy, 59, a painter and decorator at their home near St Albans, Herts, six years ago when he was four years old.
He had lost his mother to cancer and Andy and Suzannah had recently lost their son Freddie, who was born with disabilities, to an undiagnosed heart and lung condition when he was just 12.
The couple and their three younger children, Oscar, now 18, Nancy, 16 and Kitty, 13, were left reeling by what Suzannah describes as a “brutal” loss of Freddie.
And as the family grieved for him they made a decision to give a home to another child who was seriously ill.
Suzannah and Roald Dahl Nurse Lisa with Max (Image: RDMCC)
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Suzannah says: “We had adapted our home for Freddie. We had a lift from the kitchen upstairs, an accessible bedroom and bathroom.
“We had the experience and skills and most of all love to give. And we had some very frank conversations with our kids about what we should do with all that.
“Freddie was so joyous. It was like he had sunshine in his shoes. So we felt it was something we could do in his memory was to give a home to another child with
complex needs and bring some joy to them, too. And so we welcomed Max into our family.”
As a result of the complexity of Max’s condition, the family were assigned Roald Dahl Nurse Lisa Smith, 48.
Suzannah says: “I remember when Lisa first visited she listened to all we had to say, I mean really listened like she wanted to learn everything about Max.
“This wasn’t the usual 20-minute appointment with a specialist.
“I have to confess I am one of those mums who doesn’t think she needs help, so Iwas a little anxious at first sharing the care of Max.I felt I could handle this.
“But Lisa made me see that the support Roald Dahl Nurses offered just allowed me to care for Max and the rest of my family more effectively.
“And she reminded me that if I didn’t care for myself I wouldn’t be any good to anyone. And then she said to me, ‘You don’t look as if you’re getting much sleep?’
“I explained that I’d been sleeping on Max’s floor so I could get to him quickly if he needed help in the night.
“’I’m not having that,’ she said. And because she knew we wanted to care for Max at home, she organised respite right here so that half the week I get to sleep in my own bed.”
Marvin the Crocodile is the charity’s mascot (Image: RDMCC)
As a Roald Dahl Nurse she helps them care for Max and navigate the most complicated of medical journeys at home and at hospital, and Suzannah describes the impact she’s had the family’s life as “extraordinary”..
She says: “Lisa brings a mix of compassion and real medical clout to meet Max’s needs, be it co-ordinating the ten or more specialists he might need to see in a week, or working with the school to help them understand his epilepsy, or advising us if we’re worried about his feeding or breathing or sleep.
“Lisa is so caring and considered and curious and gives us all such confidence in our care of Max. Roald Dahl Nurses have dozens of patients to look after, but she never makes us feel rushed. She always makes us feel that we are her priority.
“I’ve lived this life from both sides now – with Freddie without a Roald Dahl Nurse, and with Max with one. And the difference is transformational.
“Lisa reassures us about when treatment is needed or not , when to go into hospital and when to stay at home.
“That makes a phenomenal difference to us but also saves the family and the NHS a huge amount of time by reducing the number of appointments and hospital stays.
“It feels as if we a knight in shining armour by our side. She has given us the freedom to really enjoy our life with Max, and our Christmas with him at the heart of our family.”
Suzannah Goodchild is now a Trustee of Roald Dahl’s Marvellous Children’s Charity, working to help them raise awareness of and funds for the work Roald Dahl Nurses do and to ensure more families like hers get this vital support.
Roald Dahl’s Marvellous Children’s Charity raises funds to establish Roald Dahl Nurses like Lisa in NHS Trusts across the UK.
There are currently around150 caring for more than 36,000 seriously ill children arcross the UK. The Daily Express is supporting the charity with a Christmas Appeal in the hope of providing more nurses to care for thousands more children with lifelong illnesses.
A Christmas thank you from Louise Griew, CEO of Roald Dahl’s Marvellous Children’s Charity
Louise Griew CEO of Roald Dahl’s Marvellous Children’s Charity (Image: RDMCC)
We believe every child who has a lifelong and complex health condition deserves a Roald Dahl Nurse. We have been so moved by your response to the work of our charity. The messages we’ve received from Express readers, and the donations you’ve made have been so kind and will make a real difference.
We know your letters and donations are in response to the families who’ve shared their stories on these pages and the extraordinary Roald Dahl Nurses who care for them and many other families with children who live with some of the most serious, complex and life-long conditions.
When a child is diagnosed with a complex condition families can easily become overwhelmed by a combination of financial, emotional and practical pressures (think the equipment, the medications, the hospital appointments) even while they have all the same hopes and dreams for their children as anyone else.
Although many of you have never heard of our Roald Dahl Nurses I hope you’ve been able to see the impact they make on the lives of the children you’ve met through the Appeal – like Max or Maisie, Sadie or Ada. They and their families have felt the benefits of a Roald Dahl Nurse in hospital and at home.
Suzannah whose story features today was a parent who hadn’t come across Roald Dahl Nurses when she was bringing up her son Freddie who was born disabled as a result of brain damage. He would have been 20 now but passed away when he was 12. But his life shaped Suzannah and Andy’s family life, and everything they did next – including choosing to foster Max.
Now Suzannah is feeling the difference of Roald Dahl Nursing every day thanks to the care of her Roald Dahl Nurse Lisa, and all the benefits she brings Max so he can live the fullest life, and – as a result – to her other children who can share the experience in such a positive way too. Suzannah is a parent who can speak to the difference a Roald Dahl Nurse makes, and why it matters. Please read their story, and please donate what you can. You are MARVELLOUS readers so thank you for all your support.