Hear from a few of our families
My son Preston has a rare genetic condition called Beckwith-Wiedemann Syndrome, which primarily affects his growth. His condition means one side of his body grows faster than the other, and he has macroglossia, an abnormally large tongue, meaning eating and drinking can present daily difficulties. Preston also has a strabismus in one eye meaning he has limited vision.
Preston’s diagnosis story begins at birth, where he was born with Exomphalos, a wall defect causing him to be born with his bowel outside of his body. Though wall defects at birth are an early indicator of Beckwith-Wiedemann syndrome, and he spent some time in intensive care, his condition was not formally diagnosed at birth. However, as time went on, Preston was not reaching milestones expected for his age. He was not sleeping well and presented a lot of symptoms that indicated he was not developing as he should be. There were many ongoing concerns, tests and hospital visits and, naturally, my concerns rose by researching and reading various different potential outcomes. Throughout this process, I began to get very anxious and fed-up of how long and tough it all was, as I just wanted Preston to get the support and treatment he needed. It was not until just after Preston’s 1st birthday that he was formally diagnosed with Beckwith-Wiedemann syndrome.
For me, when Preston was diagnosed, the main feeling was relief. As his condition brings a heightened risk of childhood cancers, I was reassured Preston was going to receive the close and frequent monitoring he needed, and further tests for potentially more genetic conditions.
Preston’s condition has impacted my family in various ways. Preston has Laryngomalacia which causes sleep apnoea, which can obviously affect the whole household, including his older sister. Being extremely tired myself can lead my mind to be on overdrive throughout the day, and the emotional and physical impact of everything becomes much more intense. I also worry about the effect it has on his older sister, as she often asks why Preston goes to various appointments that she does not go to herself.
For a while I had been looking for other families who had experienced what I was experiencing and really struggled to find anyone, especially in close proximity to me. I actually discovered The Maypole Project through a social media post from a friend who had tagged the project. I went on The Maypole Project website, but I wasn’t sure if we met the referral criteria. After emailing Karen, she confirmed we did indeed meet the criteria and, from there, everything from assessment to starting using their various services was so quick and easy. This was amazing after the slow processes we had experienced during diagnosis and the lack of support I had found elsewhere. As a family we regularly access Play Therapy, Counselling, Maypole Active, Toddler Stay and Play, as well as less frequent events such as Get-togethers and holiday activities and outings.
The support we have received from The Maypole Project has had a positive effect on everything. My daughter loves going to “Active” and having the time to herself, interacting with new children… and I think she may enjoy getting the attention from the volunteers! She is always asking if it is Monday or Thursday as those are the days she goes along to sessions. I feel really positive about the impact Play Therapy has on her and I know it gives her time to talk about anything that is on her mind. It gives me time to myself, or to focus on Preston, without the guilt of thinking she is sat on her iPad. I have nothing but amazing things to say. Everyone who works and volunteers at The Maypole Project have amazing patience and understanding, and nothing is ever too much. The Maypole Project has changed our family dynamic for the better and shed a really positive light on our future.
Following the birth of our daughter, Annabelle, we began to notice small things that didn’t seem right. From a very young age, Annabelle had many chest infections, and it became evident that she wasn’t reaching milestones at the correct stage like most other children her age. At 10 months old, Annabelle was admitted into hospital for a month due to a severe chest infection and it was after this admission that investigations started, with lots of hospital appointments, MRIs and testing.
Following this, Annabelle was eventually diagnosed with Global Developmental Delay, Hypotonia and Cerebral Palsy, although the diagnosis was very gradual. We felt that very little information was provided following the diagnosis, and therefore had to do a lot of our own research. The diagnosis initiated a grieving process, and we felt there was a lack of follow up care for the family.
Annabelle’s conditions have a large impact on us as a family. We have had to teach Annabelle everything; things taken for granted such as sitting up and walking have had to be taught, all of which require lots of input, time and energy. The diagnosis has also impacted the relationship between me and my husband, with us being fully invested in Annabelle and the progress she is making. Additionally, Annabelle has constant and on-going appointments, including medical appointments and therapy sessions, which average to around 12 appointments each week, leading to a very structured and busy life.
We were introduced to The Maypole Project through a combination of a friend who already accessed the service and a health visitor who suggested the project; finding the referral process very positive for us as a family. As a family we access couple counselling, individual counselling therapeutic play sessions for Annabelle and play therapy for our older son James. We have found couple counselling incredibly helpful, with it providing us with the time to open up to each other and communicate, enabling us to go through the grieving process together. Additionally, it has allowed us to explore our thoughts and feelings, and feel it is an invaluable support service. Through the therapeutic play sessions offered to Annabelle, she has made lots of progress and loves attending the sessions. It also provides me with one hour to do other things, which may not seem a long time to others, but enables me to check my emails and take a little bit of time out from being both Annabelle’s mother and carer. Before starting play therapy, James, aged 5, was displaying aggressive traits. However, as the play therapy sessions have progressed, James seems to be a lot calmer.
The Maypole Project really does focus on the entire family, and the flexible nature means that unlike other services, sessions can be scheduled to fit into our lives, and are not limited just to evenings. We feel the Maypole Project really does provide ongoing support, and is always there when required.
Our son Charlie has Spinal muscular atrophy, a progressive neuromuscular genetic condition which affects his respiratory muscles and movement. We began to notice that Charlie was having difficulty sitting up, crawling and walking; and a referral at around 11 months old to a specialist resulted in a diagnosis when Charlie was 15 months old. We were referred to The Maypole Project by social workers and the disabled children’s team due to Charlie suffering with anxiety when being on his own.
Following this referral, Charlie began to access play therapy when he was around 6 years old, and has now been attending this for around 2 years. It took a while to notice any improvements due to Charlie suffering from a few knockbacks at school, but gradually through this therapeutic intervention he has grown in confidence and the play therapy has helped to teach him the necessary coping mechanisms for daily life. The play therapist has also visited Charlie’s school on a few occasions to offer support and advice which has been fantastic.
Charlie’s conditions means that he has ongoing medical appointments and therapeutic sessions to attend to, which can be quite overwhelming at times. As a result, I regularly access the individual counseling service which The Maypole Project offer, which provides a space for me to voice my concerns and any issues I may be struggling with.
In addition to these services provided by the project, we regularly attend the Gambado evenings. I wouldn’t normally contemplate attending the same venue on public days due to the vast number of people present which Charlie can find overwhelming. However, he really enjoys the privately booked sessions and they give him the opportunity to have fun in a safe and secure environment which is great.
Bringing up a child with a complex medical need can be really tough at times. The Maypole Project is there to listen and offer support whenever required; and as a family we really feel they care for us and feel listened to.
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.
When my son was 4 years old, he was diagnosed with autism and learning disabilities. He was later diagnosed with Epilepsy and a sensory processing disorder, and now aged 12 is non-verbal and currently being tested for ADHD.
I started to access the services that The Maypole Project offer when my youngest daughter was 3 years old, feeling rather overwhelmed at the thought of bringing her up alongside my son. I first used the befriending service which was very useful and helped me to get my head around all that was occurring within my life. My daughter then began utilising the sibling support group which helped greatly.
The Maypole Project organises many activities and outings which enable my child with special needs to be alongside their sibling which is lovely, and something which not many other services provide. My daughter recently attended a sibling only outing. She loved the trip and it was great for her to be surrounded by other children who were in the same or similar position to her. This trip was followed by an all-inclusive trip, which my son and daughter could attend together. My son attends many other clubs, such as swimming, which cater specifically for his needs, but can leave my daughter feeling rather left out, so this unique aspect of The Maypole Project is brilliant. The staff on these trips are amazing, and through a combination of experienced staff and volunteers this helps to ensure that the trip is as exciting as possible for all the children attending.
The Gambado play evenings are another service which we regularly use as a family. As my son is now 12 years old, a soft play centre is usually inaccessible for him. However, as these evenings are dedicated to Maypole families only, my son and daughter can have fun within a safe environment; whilst I am able to catch up with the other families.
The ‘Get-Together @51’ mornings are also great, and provide a space to socialise with other Maypole families over a coffee and cake. These sessions are very relaxed and informal, an environment which doesn’t feel pressurised or forced, and through chatting with other parents I often come away with lots of helpful tips.