Tia-May Steedman (Age 5)
At five years old Tia-May had her first of many seizures, She has had them every day since. It was discovered that she has a duplicated gene which no one really knows a great deal about as there are only a few cases with the same duplication. We have spent a lot of time in hospital due to her Epilepsy and injuries caused from Epileptic seizures (Drop attacks).
In the last 12 months Tia-May has had a number of broken bones and head injuries and status episodes but despite this always comes round smiling despite the fact we have been told not to expect to much when she comes around. Due to the severity of her seizures/injuries and her duplicated gene Tia-May now has Global Developmental delay including problems with Speech/communication. Tia-May has been so brave and has helped us stay strong and positive as she is always smiling despite everything.
Along with all of the above Tia-May also has weakness to her left side after ‘Tonic Clonic’ episodes meaning despite her being a fit and active young lady her seizure activity (weakness) sometimes means her using specialist equipment/wheel chairs. Tia-May has had to try a number of epileptic medications including emergency medications and has suffered a number of negative side effects to these drugs. Tia-May was told she was to have brain surgery to cure her Epilepsy and travelled to Great Ormond Street hospital for treatment but it was there they discovered that her Epileptic episodes are now affecting her whole brain meaning she is no longer a candidate for cure but is a candidate for both Split brain surgery (Corpus Collostumy) and a Vegal Nerve Simulator which may reduce some of her seizures but may increase her partial seizures so we are uncertain of the way forward at this time.
The last 6 years have been a real roller coaster but Tia-May has been a very brave and inspirational young lady who despite everything continues to smile and take everything that is thrown at her in her stride. Tia-May and her siblings have also struggled with Daddy going away during this roller coaster of a ride. Tia-May’s soldier serves with the Army Air Corps and is currently based at Disforth airfield.
On hearing of the win Samantha, Tia-Mays mummys said ” I want to say a huge thank you to your charity for making Tia-May “Little Trooper of the Month of June.” Tia-May is so happy to learn she won and very excited”