Reenie's Run!

 Just wanted to say thank you to everyone reading this. June is CMV awareness month.

 Cytomegalovirus (CMV) is a common virus that is usually harmless. Sometimes it causes problems in babies if you get it during pregnancy (congenital CMV)

CMV is related to the herpes virus that causes cold sores and chickenpox.

Once you have the virus, it stays in your body for the rest of your life.

Your immune system usually controls the virus and most people do not realise they have it.

But CMV can cause serious health problems in some babies who get the virus before birth, and in people who have a weakened immune system

Some children will be born with obvious symptoms of congenital CMV such as a small head size (microcephaly), little red spots (petechiae), jaundice, enlarged liver and spleen, hearing loss or calcium deposits in the brain. Some of these children will go on to develop other problems such as cerebral palsy, seizures, ADHD, autism, developmental differences and learning delays or visual impairment.

Overall around one in every five children born with the virus will have permanent problems such as hearing loss or developmental disabilities due to the infection

 We are trying to raise money for the non profit charity CMV Action. I have given myself the task to walk or run 150 miles throughout the course of this month. Our story started on my 20 week scan, there was no amniotic fluid which suggested my waters had broke, which they hadn't. I was told my baby may be missing organs & would find out 4 days later if I could continue with my pregnancy or not.  When that time came the baby did have all organs but the heart was enlarged with fluid around & the bowel was showing brightly, which suggested downs syndrome. I refused the invasion test as it could cause a miscarriage. Every 2 weeks I had a scan, at this point I wanted to know the sex of my child rather than wait because I was told the baby might not make it. But the baby wasn't moving & we couldn't find out. As the weeks went on things were looking up, I was induced at 37 weeks as my baby was at high risk of still birth because the baby was small. I had a healthy 4lb 7oz baby girl, Reenie. We thought everything was fine until her development delays. She was referred for an MRI on her spine & brain, which showed severe damage to her brain consistant with CMV this was at 18 months old, which then was too late for treatment. Doctors went back to Reenie's 1st blood spot test (at birth) to confirm the infection. If this had been done then (at birth) things could be a lot different. She could have been offered anti viral treatment to lesson the effects of the infection, the anti viral must be given within the first 4 weeks of the babies life. She now has to have regular hearing & eye tests as the effects of CMV can show over time, she may also suffer from other things in future such as cerebral palsy, epilepsy, autism, the list is endless. She has severe developmental delay, is non verbal and can not stand or walk, she is 3 in March. Although I would never change anything about Reenie it has been the most difficult thing to have to go through, we want everyone to know this infection and understand how severe it is!!! Children can die from this infection but still there is no testing!! Please please please help us raise awareness & help other children & families in the future. Thank you!