Lu & Alfie’s Story

Speech Language Therapist Carol & Alfie 

Alfie’s mum Lu describes him as an absolute delight, and each time he visits The Champion Centre he delights staff too, with his incredible grin followed by his infectious laugh.
 
When Alfie was born, Lu knew something wasn’t quite right but despite seeing a multitude of doctors and specialists, including their GP who was very attentive, it really was a case of having to ‘wait and see’ how Alfie’s development would progress.  He avoided making eye contact, wasn’t tracking people or interacting with toys and really hated noises. At 5 months old, Alfie started having infantile spasms. After numerous hospital visits including an MRI to check for a brain bleed or tumor, as well as 5 weeks of treatment on steroids for the spasms, a genetic study finally gave some answers - Lu was told Alfie had a very rare genetic disorder called ‘FOXG1 syndrome’. Lu vividly remembers being told of the diagnosis on the last day of FOXG1 awareness month, so she hoped this was a sign she would begin to be able to find some solutions and gain support as she tried to process what this would mean for her and Alfie’s future.

Lu was invited to choose an early intervention programme for Alfie, and not really knowing which to choose, opted for The Champion Centre because a friend had worked there and being a service based in the Centre, Lu hoped she would be able to meet other parents in a similar situation and feel less isolated. Her first introduction to the Centre was a visit from Social Worker, Marguerite, and Lu described how “for the first time ever I felt really heard, by someone who understood, cared and wanted to help”. 
 
Lu described how after a few months attending the programme, she started to see the changes and progress Alfie was making with the help of his therapists. She also began to feel like she was surrounded by support and by joining The Champion Centre Facebook group for parents it enabled her to connect with the other families within the Centre in the time between programmes, which was a significantly positive turning point. Members of this group regularly meet up and connect virtually to discuss the challenges of parenting a child with additional needs, without any judgment or bias. While Lu can’t imagine life without Alfie and the joy he brings to her world, it can be exhausting and heart-breaking raising a child with disabilities.  Other whānau at the Centre understand that “this is not the life you envision as a parent” and agree with Lu that “it can be difficult”.

The Champion Centre has been a huge supporter of Lu’s goals for Alfie, and the specialists are always available to listen to her concerns.  If they are having an off day, the family support team are quick to make her a coffee and provide a listening ear. The therapists are always flexible with Alfie’s needs and if he requires more assistance in a particular programme that day, they adapt to best support Lu and Alfie. The specialists guided Lu with additional notes and resources to help her make progress with Alfie at home, and she loves the variety of the programmes we offer that are unique to the Centre.

Alfie is due to progress from “babies” to “middle years” and it is a bittersweet time for Lu.  She is excited to see how Alfie grows and develops with the addition of some new programmes including Music Therapy and Technology Assisted Learning. At the same time, she is sad to ‘leave behind’ the staff, who have walked the start of this journey with her and with whom she has made a strong connection.
 
After a recent visit to the paediatrician Lu reflected on just how much progress Alfie has made after attending our early intervention services for nearly one year. “The day-to-day experience when attending The Champion Centre helps him to be the best he can be as the additional things we get at the Centre have really made all the difference”.  Lu describes how Alfie can now roll and sit unaided and blow ‘raspberries’ (his favourite thing to do!). Most recently Lu has started to attend Hydrotherapy with Alfie and despite him still hating the bath, she reports he really enjoys Hydrotherapy and “laughs and kicks about”.
 
Alfie is now 22 months, and Lu reflects how much he loves food, cuddles, and watching and interacting with people. He has come such a long way and she speaks of how The Champion Centre has equipped her to help Alfie and continue to be a strong advocate for his needs.  The help has been “so invaluable, it’s difficult to put into words”. Lu is still quite amazed she didn’t know about The Champion Centre until they needed it.

​Looking ahead, Lu shares that she hopes he will walk and talk, and while he’s not there yet, that’s why he comes to The Champion Centre.

Celia & Alfie