Some of the special children we helped in 2009
Ava is off to Disneyland
Ava was born 6 weeks prematurely in December 2007. Although very small she appeared to be perfectly healthy. After 10 days in hospital mum and baby were going home when a paediatric discharge check revealed that Ava had extensive brain damage and hydrocephalus, She was rushed to Great Ormond Street for emergency surgery to remove fluid from her brain and after a second operation she was diagnosed with congenital toxoplasmosis. Her parents were also told at this time that Ava was blind and there was nothing that could be done to rectify this.
An infection contracted by Ava”s mum in early pregnancy had resulted in a parasite attacking her tiny brain and causing her retina”s to detatch and not form effectively. Ava started on an intensive course of treatment in Jamaury 2008. She had daily medication to prevent the parasite from reactivating as well as mediacation to protect her bones as the treatment was similar to that of cancer patients. Ava finished her treatment in January 2009. Ava has also been diagnosed with Cerebral Palsy and is unable to sit or stand independently and it is unliokely Ava will be able to walk. I will let Ava”s mum finish the story with the following extract from a letter we received from her:-
As you can imagine the last 19 months have all been a bit of a blur. Ava has a 4 year old brother George, who has made endless sacrifices and had to cope with his mum and sister disappearing in the middle of the night, whilst he sleeps, as an ambulance has needed to be called. The last time we went he asked me if he would ever see me again. He has been an utter star since Ava was born and loves her dearly. He helps out with her physio and massage and actually does a better job than his Dad most of the time as he see”s me doing it every day so has learnt quickly. George has also accepted the high levels of care that Ava needs and the impact this has on the amount of time he gets with me. He rarely complains and is slowly getting used to the constant intrusion of professionals coming to visit.
Ava has brought untold amounts of joy to our lives, despite all her difficulties and is a remarkably happy child who teaches me something new every day. She offers an indescribable level of joy from doing the simplest of things. I cried for hours after she gave me her first smile at 5 months old, and watching her little hands feeling round to find things never ceases to fill me with immense pride. Ava has a very chilled out personality when she is in good health and smiles and shrieks with joy at the simplest of things, usually at 2am when the rest of us are trying to sleep! When we were first told of all Ava”s needs I never imagined the joy she would bring to us. The fear of how we would cope and the speed at which things came at us was too overwhelming and we don”t feel we have had any time to digest what has happened as there has always seemed to be another crisis lurking round the corner. We have found our way though, Ava has shown us new ways to play and experience life and we write our own plans for life with every day of pleasure yet utter exhaustion she brings.
We are really hoping life will start to calm down for us now. Ava is slowly building up an immunity so infections are finally calming down and we are hoping to start experiencing the normal things in life again and aim to have some quality time together as a family. We have had no quality time together since Ava was born as she has been constantly unwell, things that we used to take for granted like holidays, days out, have been virtually impossible as Ava has either been unwell, in hospital or facilities have not been appropriate for Ava”s complex needs. We have had to get used to taking George out on his own, with just 1 of us as Ava has not been fit enough for full days out so George has missed out on having time with his Mum and Dad together as we have no one to care for Ava. We attempted a holiday earlier this year, family helped out with the cost and we booked a break in Norfolk. Ava unfortunately had a chest infection before we went and only came out of hospital 2 days before we went. She deteriorated rapidly as soon as we got away and had to go into hospital a day after getting there. We decided to come home after a few days as it was just too stressful for us. George was devastated as it was the only holiday we had had since having her and he was looking forward to some nice days out.
What we want more than anything is for Ava to experience normal, fun, family life and to get a break from all the intervention she has needed to keep her on the right track. We have been assured that she is over the worst now and her immunity has started to build and infections decrease. This should mean less hospital admissions and for the first time we actually feel that this is where our life as a family begins. The worst is behind her and she can move forward without the constant set backs of infections and ill health. This is where we begin our normal. Life is not normal in the sense that it is for other families but its our normal and we want to move forward and give Ava the start she should have had 19 months ago.
What we would love is a family break to spend quality time together where we can all have a rest and switch off from the stresses and strains of the past and kick start our new life together. I feel George actually deserves this as much as Ava as he has endured so much and had to grow up well beyond his years so is well deserving of a treat and a thank you from his sister for all the love he has given her. Ava is quite a party animal and much to my amazement thrives in a party atmosphere. She loves music, the louder the better and enjoys the sensory experience of new environments. If we had a fairy godmother we would ask her for a break at euro Disney to give us the fun family time we have missed, in a child orientated environment where they can be spoilt rotten by everything that is on offer. So if you can be our fairy please make our dream come true and give our family the kick start we need for the new chapter in out life that awaits.
Needless to say, Wipe Away Those Tears is the fairy godmother and Ava & George are off to Disneyland with their Mum & Dad.
Lois is Swinging
Lois is 2 years old and has a very rare metabolic terminal discease which is a deteriative condition. Lois is also tube fed and has lost all her skills except smiling and laughing, especially when she is on a swing. We have supplied Lois with a specialised swing which is comfortable and safe and from which she will get hours of pleasure.
Harley gets his special car seat
Harley was a healthy normal little boy until June 2008 when it was discovered that he had a brain tumour and was sent to Great Ormond Street where he underwent a 8 hour operation . He then spent 2 months in hospital with his parents living in with him. He had numerous complications after the operation including blood clots and meningitus.
The operation left Harley unable to sit unaided, stand or hold his head properly. Harley had outgrown his car seat and needed a more specialised model with a 5 point harness and a pivot seat which would enable him mum to get Harly in and out of the car without any bumps. He also need a new specialsed seat for his garden swing and Wipe Away Those Tear were pleased to provide Harley with both his car seat and his swing.
Charlie enjoys the sunshine
Charlie was taken ill at 8 months old with a brain infection which left him disbaled, unable to walk or talk. Charlie is not yet able to sit up properly and as his garden was completely concrete it was dangerous for Charlie to sit in the garden as he is not completely steady when sitting up alone and often throws himselt back and bangs his head.
Wipe Away Those Tears have provided specialised garden tiles so that Charlie will now be able to sit out in the garden and enjoy the sunshine in comfort.
Aidan is happy with his Bubble Tube
Aidan is 13 months old and has Downs Syndrome, developmental delay, a small hole in the heart, a slight heart murmur and has already undergione major surgery. Aidan is in discomfort and does not sleep well at night due to wind and stomach bloating. Despite his problems Aidan is a happy cheery boy and loves the bubble tube in the sensory room when he goes to First Step, it makes hom happy and relaxed.
Wipe Away Those Tears have given Aidan with his very own Bubble Tube and we hope he has many happy hours with it.
Lydia & Poppy Love their new Buggy
Email from Lydia & Poppy’s Mum:
Lydia was born on 22nd February 2005. I had to have a c-section because she was breech. The midwife called for a Doctor after she was born to check her head, which we thought was normal practice. As you can imagine when he said our daughter had Down syndrome we were in total shock. We didn’t know she had Down syndrome until that moment, she went undiagnosed throughout the pregnancy. We were a young married couple who were having to come to terms with firstly having a baby to look after and that our daughter was different. It was a hard few months but we got through it.
Lydia had physio sessions from 6 weeks old and around this time we also found out that she had three holes in her heart, which would require intervention. She also had very low muscle tone and for years we were under the physio trying to strengthen Lydias muscle tone.
Lydia finally had the all clear from the hospital about her heart in September 2006 and to our surprise she didn’t need an operation, the holes had closed with medication!
As time went by we realised that lydia’s mobility was delayed. She started a mainstream pre-school at 2 years 3 months and she mainly bum shuffled everywhere. Then she began to stand, take a few steps holding onto your hands, walking along the furniture and finally walked independently in May 2008 when she was 3 years 3 months. We were over the moon, our little girl finally started to walk, but still couldn’t walk any real distance so we still used a pushchair.
We had our second daughter, Poppy in October 2007; Lydia was happy in a double pushchair with her sister and her posture was well supported.
But as time went on and the girls grew older the pushchair was becoming too small for them. Lydia is 4 and a half now and Poppy is nearly 2.
After a lot of research I realised there was nothing on the commerical market that was suitable for both our childrens needs thus I couldn’t go anywhere without someone with me. I had contacted the NHS wheelchair service and it was not their policy to supply a double pushchair for siblings. It was a nightmare! I found a company who could supply a double pushchair for a disabled child and their sibling! I couldn’t believe it!
I contacted Wipe away those tears and they lived up to their name. They purchased the pushchair for us, they sure wiped away the tears. We haven’t used the car in three days and for us that is a record! I can’t thank the charity enough for their generous donation, it really has turned our lives around, we can finally go to the library, go for a walk and even do a bit of shopping! The pushchair is fantastic and the children love begin able to talk to each other while I am pushing them – what more could we ask for?