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Scudder Family

The birth of our first son, Zac, was long awaited. From around 5 weeks onwards, he started to develop chest infections and it gradually became evident that he was failing to reach cognitive milestones. At a speech and language appointment at the Phoenix Centre, we were told that Zac had a rare condition that probably wouldn’t ever be diagnosed, and that his chances of learning to talk were very small. From that point onwards, we had continuous medical appointments in the search for a genetic condition, all of which occurred during Zac’s sisters first year of life, with us finding ourselves fixated on Zac’s life and the quest to try and uncover a diagnosis. When Zac was 5 years old, an appointment with a geneticist at Guy’s Hospital proposed that Zac had Bardet-Biedl syndrome, a rare inherited disorder. This appointment was followed by various scans and tests, before it was finally confirmed at Great Ormond Street Hospital that Zac did indeed have Bardet-Biedl syndrome. This diagnosis came as a huge shock to all the family, with it not being the prognosis we wanted.

I picked up a leaflet about The Maypole Project when at Great Ormond Street Hospital, but didn’t ring at first as I thought I was coping with the diagnosis. However, within a week of the diagnosis, I felt like I had hit a brick wall and that everything was tumbling down, and I just had to ring The Maypole Project and start the referral process.

Although I have never had any official counselling sessions, I am in regular contact with staff at The Maypole Project, with them always being there, either just listening or offering suggestions. Our daughter, Zara, accessed play therapy sessions offered by the Maypole Project when she started school. These sessions greatly helped Zara and she absolutely loved them, and within a few weeks of this therapeutic intervention she was a completely different child, being much more relaxed and calmer. In addition to play therapy, we regularly attend the Maypole Gambado evenings, an environment where I am able to relax with my children. These evenings are simply amazing, and provide the children with a safe venue to have fun in whilst I can talk to other parents.

The Maypole Project provided Zac with weekly play sessions in order to support and prepare him for the transitionary period of attending a new school, in addition to introducing him to the idea of getting transport to his new school. Recently we were let down by SEN transport, which was immediately followed by calling Maypole for advice. Within two days, a solution was provided which meant that Zac arrived for his first day of school happy and contented, and I feel without this intervention led by Maypole, Zac wouldn’t have attended his first day of school. In situations like this, Maypole is always my first point of contact, before I talk to the schools, hospitals or social workers, I will always call Maypole first.

We would have been in point of crisis without the support provided by The Maypole Project. Without them, I truly believe that I wouldn’t have been able to function during the earliest of weeks following the diagnosis, and that my daughter would have suffered with a greater deal of issues. Maypole is our safety net, always there to rescue us when needed, and we are eternally grateful for the support they have provided us with.