Raquel Amit

Raquel Amit

Raquel Amit is raising awareness of CMV


Total raised so far£0.00

Total plus Gift Aid: £0.00


Raised offline: £0.00

My story

[p]Disclaimer: I am not a runner. I signed up to this 10k run for the chance to run in the stadium where I watched many events during the 2012 Olympics with my husband, my late-Mum and our very small 8 week old firstborn with comically large baby ear defenders against the noise.  Memories can do that.[/p] [p]The sponsorship element has come quite late in the day but I decided not to ignore the opportunity – not because of the actual fundraising, but because of the raising awareness element of it (and really, they do go hand in hand).[/p] [p][/p] [p][b]The short factual story:[/b][/p] [p]Our family consists of my husband, Yoav, and our two daughters, Maya and Leila. Our youngest daughter, Leila, was born with congenital cytomegalovirus (cCMV) and has unilateral hearing loss as a result.[/p] [p]CMV, or Cytomegalovirus, is a common virus that can infect people of all ages. Once CMV is in a person’s body, it stays there for life. Most healthy adults and children who become infected will have no signs or symptoms and no long term effects from CMV.  It can however pose serious risks to unborn babies if a pregnant woman catches it for the first time. Congenital CMV is when a baby has been infected before birth. It is one of the leading causes of hearing loss in children and one of the main causes of childhood disability.  [/p] [p]CMV is found in bodily fluids, including urine, saliva, blood, mucus and tears. It is spread through close contact with bodily fluids. The main way pregnant women catch CMV is from small children’s saliva and urine. So women who work with children, or who have a family already, need to be especially careful during pregnancy. There are some simple measures that can reduce the chance of catching CMV infection:[/p] [p]Don’t share:[/p] [p]Avoid putting things in your mouth that have been in a child’s mouth. When possible, try not to share food, cups or cutlery.[lt]br /[gt]Avoid kissing a child on the lips. [/p] [p]Wash with care:[/p] [p]Clean your hands after touching a child’s urine or saliva.[lt]br /[gt]Wash hands well with soap and water.[/p] [p]For more information, please visit [url=http://cmvaction.org.uk/]http://cmvaction.org.uk/[/url] [/p] [p][/p] [p]I am running to support CMV Action to raise awareness of this potentially devastating virus.  It is a relatively new charity with a mission to educate professionals and parents about CMV, support families affected by CMV, to support the development and implementation of research into better testing, treatment and management of CMV and to raise awareness.  [/p] [p]I have also chosen to support the Jewish Deaf Association because they have been a warm and friendly centre of advice and social interaction for me and many other parents who I (now) know with deaf children of varying severity and causes.  They take a personal approach to their support.  JDA’s mission is to improve access, independence, equality and inclusion for people with a hearing loss, thereby breaking down barriers between deaf and hearing people by informing, supporting and educating.  Originally set up to support the religious, cultural, social and physical needs of deaf people of the Jewish faith, services are now broader and open to everyone. http://www.jdeaf.org.uk/ [/p] [p]Thank you for reading, but most importantly, please share this information with any friends who are pregnant or planning a family.[/p] [p][/p][p][/p] [p][b]The longer story:[/b][/p] [p]Our beautiful girl was born without complications on a wonderful February day in 2014. The only niggle was that she failed her newborn hearing test a couple of hours after birth.  “That’s not uncommon”, said the midwife, “she probably just has water in her ear from the water birth.”  We were sent for a further test the following week, which again, she failed in her right ear. “She probably still has some water sitting there”, they said… but this time they referred us elsewhere again for more in-depth tests and a consultation. [/p] [p]After several hours in a sound proof room, the consultant broke the news that Leila did indeed have moderate to severe hearing loss in the mid to high frequencies in her right ear.  The cause at that point was unknown, but further tests would be carried out on her urine and blood to see if they could determine the cause. Several possible reasons were given and the consultant began to talk in percentages about the likelihood of each.  She then mentioned congenital cytomegalovirus and told us not to ‘Google it’ under any circumstances.[/p] [p]Obediently, we waited, and a couple of days later I received a call from the Centre. The consultant regretted that Leila’s tests had returned positive for CMV – the virus was the cause of her hearing loss by irreparably damaging the hairs in the cochlear region.  What we quickly became aware of was the plethora of other disabilities that can be caused by cCMV –  including cerebral palsy, seizures, ADHD, autism, developmental differences and learning delays or visual impairment to name a few. [/p] [p]From there began a long road of hospital visits and a leap into the unknown.  We agreed to treat Leila with a 6 month brutal course of valgancyclovir, a retroviral drug used to suppress the viral load of the virus with the hope that her hearing loss would not deteriorate and no other further damage would be done.  Thankfully, she tolerated the regimen well and the weekly, then monthly blood tests showed her viral loads were dropping rapidly.  At the tender age of 6 weeks, Leila underwent an MRI scan. I think that was the first moment that this diagnosis really hit me.  The doctors were checking for brain abnormalities and calcifications which can be typical of CMV. Seeing my little baby swaddled in what looked like a glass coffin was heart-rending.  Thank G-d, Leila had only very minor alterations in her brain structure and we breathed a sigh of relief.[/p] [p]Leila is now a bubbly and bright 3 year old who has been engaged in regular physio, speech therapy, eye, ear tests and neurological development consultations up to this day.  Other than her hearing aid, which she wears proudly, as yet, she displays no other obvious symptoms of cCMV and has caught up to her peers beautifully. We feel so fortunate that Leila has only been mildly affected – being part of online CMV parent communities made us realise just how many people have been touched by this virus – many of whom have suffered miscarriages or lost babies and children at young ages, or are facing far greater challenges than ours on a daily basis.  The one thing we all seem to have in common? None of us had heard of CMV before… [/p] [p]And that is why I am running for CMV Action.[/p] [p]A common feeling among mothers of CMV children is of guilt that their unborn child has been affected by a virus that we unwittingly contracted during pregnancy and passed on.  There are preventative steps that can be taken to prevent the transfer of the virus, but knowledge and awareness is key. We all know there are many things to avoid during pregnancy, certain foods, alcohol, nicotine… why shouldn’t we be taught that sharing your toddler’s utensils or cup, or kissing them on the lips could have far-reaching consequences?  It is not scaremongering to provide information. Current research suggests that the window of efficacy is small with the treatment of CMV by medicine – it must be started by 4 weeks old. We were just on the cusp of that limit because of the waiting time between the different hearing tests and the time a urine test was finally taken. What took so long?  CMV Action is on the case in this country and needs support.[/p] [p]Thank you for reading.[/p] [p]Raquel Amit[/p] [p]--[/p] [p]Through Virgin Money Giving, you can sponsor me and donations will be quickly processed and passed to charities. Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity's behalf where the donor is eligible for this. I really appreciate all your support and thank you for any donations.[/p]

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Personal Challenge Date

02 Jul 2017


Aug 18, 2017


Well done Raquel!


Jul 16, 2017


"All the same...Raqster...you rock!" Glad tidings from NYC


Jul 12, 2017


Well done to a great girl!!!!


Jul 3, 2017


Well done Raquel! Thanks so much for raising awareness about this important risk. You and Leila are an inspiration!! With our best wishes Chaim and Mireille Rubin (Toledano) xxx


Jul 3, 2017

Family Benveniste

Good cause, be well, love to all.

Jul 3, 2017

Jason D

We went through a similar journey when our daughter was born, failing the initial screening, being told don't worry it's likely nothing, until it was something. Here's hoping that any little bit can help towards less parents going through what we have.


Jul 2, 2017

Tami, Gary and Zac

Well done. Sorry didn't get round to donating earlier xx


plus £5.00 Gift Aid

Jun 30, 2017


Well done Raquel - good luck!


plus £18.75 Gift Aid

Jun 30, 2017



Jun 30, 2017

Hayley and Elan

Good luck!!!


plus £12.50 Gift Aid

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