Published: 00:01, 28 September 2014 |
Kayleigh Rigden, of Whitstable Road, Faversham, is only too familiar with this feeling after her son started fitting four times a day at just seven months old.
Harry Rigden came into the world seven weeks early on July, 16, 2013, weighing just 4lb 15oz. He spent a month in an intensive care ward at the William Harvey hospital in Ashford.
Out of hospital and six months down the line, Kayleigh, 28, was looking forward to a happy and healthy life with her beloved son and husband Lee, but it wasn’t long before Harry was diagnosed with a rare form of epilepsy – Infantile Spasms.
“The episodes became more and more frequent and aggressive as Harry’s body would completely clench and he would cry hysterically" - Kayleigh Rigden
Kayleigh said: “He had a few minor delays, but nothing we thought was not to do with his prematurity.
“But then he started doing these jerky movements where he used to turn his head to one side and stiffen his body.
“This would happen every 10 seconds, and would last just a few minutes. I told the doctors, but they did not think it was very serious.
“But the episodes became more and more frequent and aggressive as Harry’s body would completely clench and he would cry hysterically.
“Whatever I tried to do to help, I could not stop them from happening.”
The seizures started happening during the night and lasted longer and longer until Kayleigh demanded answers from doctors.
In a strange stroke of luck, Harry had one of his episodes in front of a doctor at the William Harvey hospital and was rushed in for an ECG, where Kayleigh finally got a diagnosis for her son.
Infantile Spasms are a type of epilepsy affecting one in 3,000 children and characterised by the appearance of the seizures where the child bows forwards and backwards.
It is most common in babies aged from three to eight months.
Harry has started steroid therapy and takes Epilim and Topiramate to control his seizures.
Kayleigh said: “We are very lucky as Harry is currently seizure free, but as with a lot of children with Infantile Spasms, he is physically and mentally delayed.
“The NHS has been amazing since Harry was diagnosed and he is currently having physiotherapy and occupational health.
“Even though Harry is very delayed, he is slowly progressing and this means the world to us.
“Since being under seizure control, Harry is so much happier and is such a joy. I am so proud of him as he has been through so much and is only just over one year old. He is my hero.”
Kayleigh is hosting a fundraiser for the young epilepsy charity at Faversham Cricket Club in Selling Road on Friday, December 5, and is hoping to raise more than £400.
Tickets are £10 and on sale now . To buy tickets, email Kayleigh on firstname.lastname@example.org or call her 07792336578.
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