As many of you will know Alma is registered as Severely Sight Impaired / blind and Suzie is awaiting for the same tests at the Ophthalmologist. 

We would like to raise money for Guide Dogs because this charity have been there for us and hopefully will continue to be in the future.

Many people are unaware that as well as all of the vital work that Guide Dog's do in breeding and training dogs for visually impaired adults to gain independence, they also provide a Children's and young people's service (Formerly known as Blind Children UK).

The family support service offers practical advice and a listening ear for families from early diagnosis onwards. This is a service we found very useful when Alma was first diagnosed. 

They have an educational service to help ensure that Blind and visually impaired children receive the educational support they require to reach their potential.

Many of you will have seen Alma with her little white cane, we are very fortunate to live under a Local Authority that still provide this support, shockingly many councils have cut this support and Guide Dogs have a habilitation and mobility service to try to reach all visually impaired children and ensure that they get the vital training needed to gain independence. 

Guide Dogs also provide recreational activities for Children who are visually impaired / blind. We have attended a couple of these events and they are great for the children to meet others who are visually impaired, but also provide the parents with a support network of other parents to talk to. We have found this to be particularly useful and are sure in the future it will be great for Alma and Suzie to meet other blind and visually impaired children just like them.

We hope to raise money for Guide Dogs to keep this charity running for many years to come. Alma loves the guide dogs that we have met, and we are sure that being matched with a Guide Dog is something she may explore when she is older.

Your donations are much appreciated to help us support Guide Dogs in all that they do for Blind and visually impaired children and their families too.

A bit more info about us:

So a few people have been asking me about Alma and Suzie's visual impairment, how much they can see etc. Alma has a diagnosis of Lebers Congenital Amaurosis (LCA) this is an inherited eye disease affecting the retina, it is caused by a gene defect and specifically the GUCY2D gene in our case. Children with LCA are usually registered severely sight impaired or blind. Alma does have some functional vision but in truth we still do not know exactly how much, it is estimated at 1:60 or less, meaning she would need to be a meter away from something we could see at 60 meters away. To be honest often I think it is less than this but then very occasionally it seems like she sees something a little further away. The visual impairment team are working on the basis she will be a tactile learner and use braille. 

Secondary to the LCA Alma has nystagmus which is an involuntary movement of the eyes, Photophobia leading to increased light sensitivity and also far sightedness. So far Suzie has been diagnosed with all 3 of these secondary conditions but the LCA can only be diagnosed with an electro diagnostic test which we are still awaiting. 

So you've probably picked up I said inherited. Yes,  this is an inherited condition but no, we don't have any family history of this condition. LCA is inherited in an autosomal recessive pattern. Meaning that both parents have to be carriers of the same gene mutation to pass the condition on. It is apparently very rare to find a partner with a matching gene mutation. Secondly the condition has only a 1 in 4 chance of being passed on with every pregnancy, or a 25% chance. This is what makes the condition so rare as we actually had 75% chance of our babies not having the condition with each pregnancy. 

When Alma was first diagnosed we had no idea of the severity, and what support she would need going forward. Talking to the Guide Dogs children support worker that was allocated to us really helped us to understand more about visual impairment and realised that everything was going to be OK. 

SOME EXCITING NEWS ABOUT OUR FUNDRAISING MONEY:

We have recently been fortunate enough to attend the Guide Dogs Family weekend for children with a recent diagnosis of visual impairment. This was our second time attending the weekend, initially when Alma was just over a year old and then we were invited to return when Guide Dogs heard about Suzie also being diagnosed with a visual impairment. 

This family weekend was so important to us as it provided us with an opportunity to meet other families and also the experienced staff. For many,  it is the first time that they have attended any events specifically for visually impaired children and young people. This was the case when we attended with Alma and we found the weekend invaluable. During the weekend we had access to a range of trained Guide dogs workers including family support, education and habilitation workers. We were able to attend workshops while the children are cared for in a creche at the hotel. Again for many this is the first time they have left their babies alone, and some of the children attending the weekend have quite complex health needs, so it was reassuring that the creche provided had experienced staff with a large team on hand to care for the children. This allows the parents to attend the workshop's without worrying about their children. 

Often there are staff on the weekend who are blind or visually impaired also. On attending with Alma we met a staff member with the same eye condition as Alma, this was such a positive experience for us and enabled us to see that she can go on to achieve her dreams. On our recent visit we also had the pleasure of meeting a young volunteer, at 15 years old he has just had his first Guide dog and gave a really great talk on growing up with a visual impairment and the useful technology he uses. Seeing how well older children and adults are coping is so reassuring to a family just at the start of the V.I journey.

At the weekend we also had the opportunity to socialise with other families, building up our own support network and sharing stories. Just being with other families of visually impaired children offers the families reassurance as "they've been there too".

During the weekend I spoke to the Guide Dogs team about our fundraiser and whether the money raised could be used for the children and young peoples services. We can now confirm that the money we raise for our fundraiser will go towards sponsoring next years weekend. I am so happy that the money will go towards this weekend for the new families who have just found out their children have a visual impairment. We cant thank Guide dogs enough for giving us the opportunity to attend this weekend and offering the support again when Suzie was born. It really has been a positive experience for us and we know it will be for all of the families who attend next year too. 

We have a breakdown of costs provided by Guide Dogs to help show the sort of things the money will go towards for the children and families attending next year. Thank you again to everyone who is supporting us with our fundraiser. We really have been overwhelmed with the support we have received and cant wait to have lots of fun at the party.

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.