Fran and Ahnie’s story
As a foster carer, Fran first met and cared for Ahnie when he was a baby. When he became eligible for adoption aged 20 months, Fran didn’t hesitate.
She knew Ahnie had nystagmus, which affected his sight. He’d developed this around nine months, but it wasn’t until he turned two that a series of tests at Great Ormond Street Hospital highlighted he was severely sight impaired.
“Then Ahnie began to experience episodes of collapse. That was the first sense we got that something wasn’t OK,” says Fran. “We thought he was having seizures. Doctors suggested ataxia, maybe a mitochondrial disease because he had such fatigue and would sleep so much, and there was talk of a life-limiting condition.”
It was during this time that a health visitor referred the family to Rennie Grove’s children’s service. It was a timely introduction. By 2019, Ahnie was registered blind. At the age of 5, he was diagnosed with autism and ADHD. There was still medical uncertainty surrounding his condition, and the root cause of it.
“Having the Rennie Grove team to call on has made such a difference to us” explains Fran. From accompanying Fran and Ahnie to appointments, chasing referrals, signposting grants and other support, and now supporting Ahnie through play sessions, Fran says Rennie Grove has changed their lives.
“The Rennie Grove children’s specialists see the whole child, and they remind Ahnie’s other healthcare professionals to work together instead of treating each symptom separately. The children’s nurses are fantastic at coordinating his care. They follow up delays and chase appointments and they take that pressure off me. When you’re caring for a child with special needs, you don’t have the time or energy to chase everything up. At times I felt unable to cope and so frustrated that I wasn’t getting replies from professionals when I was desperate for help. With Rennie Grove, I always hear back. And they always manage to get a response and move things along where I haven’t been able to.”
"With Rennie Grove, I always hear back. And they always manage to get a response and move things along where I haven’t been able to."
“Having a children’s nurse with us at hospital appointments in London has made such a difference. Ahnie’s behaviour had become quite challenging and as a single parent I found it almost impossible to manage the journey then listen to what the specialists were saying and address Ahnie’s needs as well.”
The children’s nurses also worked with Fran to get Ahnie the support he needs to remain working at his cognitive level in a mainstream school.
“Despite all his health challenges, he can meet his learning milestones as long as he has the right support in place,” says Fran. “Without Rennie Grove’s help and reassurance, I wouldn’t have had the confidence or self-belief to keep pushing for that support. It’s hard without a diagnosis, but Rennie Grove encouraged me to provide video evidence and the nurses attended reviews with the local authority to give the healthcare professionals’ perspective on Ahnie’s complex needs.
“They’ve also helped us access other things that have transformed Ahnie’s life. For example, charities that help with access to hospital by providing volunteer drivers and support workers. A grant for an all-terrain buggy that means I can get Ahnie out and about in the countryside and walk his companion dog, Stan.
“I wanted Ahnie to have a dog while he could still play and run with him. When he’s older, he’ll qualify for a guide dog so it’s good to get him used to caring for a dog. Stan can fetch things for him and the pair have become best friends. Ahnie has two beds in his bedroom. He’s too scared to be in there by himself, but he’ll go off to sleep as long as Stan is lying on the other bed. Once Ahnie’s asleep, Stan comes downstairs as if to let me know he’s off duty now!”
As Ahnie has become more aware of his health and his limitations, he has started to question and feel frustrated by the differences between him and his peers. Fran says fortnightly sessions with Rennie Grove’s play specialist, designed to help children understand illness and process difficult feelings, has really helped with this.
“I don’t know how the play specialist does it, but she makes an incredible difference. She helps Ahnie connect to his emotional self and the benefits last for days. He’s calmer, more affable, his emotions are more regulated. You can tell he feels better about himself. As a parent, you can’t put a price on that.”
"Ahnie’s Rennie Grove nurse came with Ahnie and me that day. That meant such a lot to me. I couldn’t face asking a friend to come with us as I couldn’t find the words to explain why I was going."
In October 2022, after extensive testing, Ahnie was formally diagnosed with a form of mitochondrial disease. Fran says:
“I was told of Ahnie’s diagnosis over the phone. It was a very distressing call as the condition is neurodegenerative and causes the symptoms he has been experiencing. It was so much information to take in, especially over the phone.That evening I was utterly distraught. I walked into the kitchen and saw Rennie Grove’s 24-hour helpline number pinned to the fridge. From the moment I dialled that number I received incredible support. A lovely nurse spoke to me on the phone and then Ahnie’s named nurse came to the house to support me.
“The next step was to attend an appointment at Great Ormond Street Hospital with the neurologist and neurodisability paediatrician. It was a lot, but Ahnie’s Rennie Grove nurse came with Ahnie and me that day. That meant such a lot to me. I couldn’t face asking a friend to come with us as I couldn’t find the words to explain why I was going.
“Having that support from Ahnie’s Rennie Grove nurse really has made all the difference between me coping and falling apart. We now have a multitude of other appointments to attend. There is so much to take in during those appointments that just having someone else there, who can not only listen and advocate for Ahnie, but can fully understand what is being said and help me to digest it afterwards, is invaluable.
“Ahnie’s diagnosis is a huge thing for our whole family to cope with. I also have grown up children and the psychological support offered by Rennie Grove has been very useful in helping them to understand and come to terms with Ahnie’s prognosis.”
Where to next?
Learn more about our care from some of the wonderful patients, carers and families we've had the privilege of supporting.
Volunteer with our patients, families and those who care for them
Our volunteers help support patients, families, carers and those around them in key roles across Herts and Bucks.
Children’s Hospice at Home
Our Children’s Hospice at Home team support children aged 0-18 who have a life-limiting illness.