A group of friends are running the Manchester half marathon on 28th May 2017 to raise money for two wonderful charities that provide amazing support for Pippa. Marlow Opportunity Playgroup and Chattertots Speech and Language therapy group. Full details below.
When Pippa was born, we were overjoyed that after a short stay in the special care baby unit, we were able to take her home with us. We were so fortunate that we had a very healthy and happy little baby, who happened to have Down's syndrome. Pippa smiled, rolled over, ate, slept and cried like all little babies her age. She was developing well. We had a family holiday abroad and everything was going well, until we noticed some small startle like movements. After a trip to hospital and an emergency EEG, Pippa was diagnosed with a catastrophic childhood epilepsy called Wests Syndrome (Infantile spasms). Pippa development significantly regressed until she was able to do nothing except open her eyes and sometimes cry. She stopped eating, all ability to hold her head up, made no eye contact, she stopped smiling. She tried aggressive frontline medications for her epilepsy and also other anti epileptic medications in order to try to stop her having hundreds of seizures per day. Unfortunately, despite leading experts involved in her treatment, we couldn't control her seizures for almost 1 year. By this stage the impact of so many seizures on her neurological development had taken its toll. She also has very low muscle tone, she had severe gastroesophegal reflux which led to her having multiple severe pneumonias and now requires oxygen at home on a regular basis. Pippa has had an operation to try to prevent so many life threatening episodes and is now receives all medication and food through a PEG feeding tube inserted directly into her stomach. Her seizures are no longer controlled and she is waiting to start a specialised diet in order to try to help control the multiple daily seizures that have such an impact on her. We are currently awaiting genetic test results to see if her health issues are due to another underlying genetic condition.
Despite all of her challenges, Pippa is a very loving, happy little girl that loves sensory stimulation such as looking at lights, and tactile games like clapping. She really loves her brother and lights up when he visits her in hospital or cuddles her at home. She loves people singing to her and helping her to play with toys. She has the most wonderful smile now that it has returned, and loves cuddles.
We are fundraising on behalf of two charities that have worked so wonderfully with Pippa and provided unrivalled support for us as her parents.
We are incredibly fortunate that she is able to attend Marlow Opportunity Playgroup (MOP). MOP is unique within the area, providing early intervention for pre-school children, most of whom have a broad and varied range of diagnoses including: Autism, Cerebral Palsy, Down's syndrome, visual impairments, speech and language delays, and various other genetic and neurological problems. They have a team of trained, experienced and motivated staff who are knowledgeable about, and supportive of the children's needs and learning requirements. They can offer 1:1 support (aiming for a minimum of 1:2) where required; ensuring that every child is able to access all available activities, including many that would otherwise not be accessible to these children. They also give valuable help and support to their carers and families.
This playgroup are amazing, and receive no additional funding than any other registered playgroups. They are a registered charity that fundraises to help meet additional costs requires to make it such an inspiring and accessible facility. Pippa has thrived since she has been at MOP.
The second charity is called Chattertots. It is a not for profit organisation that are under the East Berkshire Downs Syndrome Association charity that provides speech and language therapy for children with Down's Syndrome. They provide specialist therapists specifically experienced in working with children with Down's syndrome, providing weekly early intervention communication techniques such as maketon/ signing in order for children with Down's syndrome to communicate and interact with the world they live in. Pippa's 1-1 sessions have been tailored specifically to her additional learning disabilities and therapists provide alternative techniques to try to help Pippa to be able to communicate her wants/ needs. Chattertots is run by dedicated parent volunteers who fundraise to meet the majority of the costs of the Speech therapy, to enable it to be as accessible to all children with Down's syndrome in Berks/ Bucks.
Should enough funds be raised, we would like to donate to Wexham Park Hostpital children's ward that Pippa needs to stay in regularly and also use it to help fund a special need travel bed for Pippa that will enable us to be able to stay overnight away from home with Pippa and keep her safe. At home she requires a specialised hospital style bed with high sides that she cannot fall out of at night, that allows her feeding and oxygen wires/ tubes to be safely connected to her and protects her if she has a seizure.
Thank you all for your wonderful support
For these amazing charities that help so many people and Pippa loves to be a part of xx