Hello to all the wonderful readers. We would like to start off by giving our sincere and heartfelt thanks to each and every one of you for continuing to support Fionn’s fundraising campaign.
Our next fundraising event is a 5km fun walk in the beautiful and scenic Doneraile Park on Bank holiday Monday 5th August. We hope to make this an annual event going forward.
Registration at Doneraile parochial hall 11am – 12 noon (please note we have been asked if all participants would park their cars at Doneraile park and walk up to the parochial hall to avoid traffic congestion for residents. Thank you.) Adults €10, children free. The walk is starting at 12.30pm sharp in Doneraile park.
Sponsorship cards are available in Charleville from Blown Away Hair Salon, Horizon designs, the Oriel Press and also from the committee members. (Free entry with sponsorship cards, we will also be having a raffle for some fantastic prizes on the day)
As this 5K fun walk coin-cides with the miraculous event of Fionn’s 5th Birthday we would love it if you would join us for light refreshments and a Birthday Celebration at the finish line.
I think perhaps you know some of our story by now but as we invite you all to celebrate Fionn’s 5th Birthday at the 5km fun walk in Doneraile on Monday 5th August we feel it is very important for you all to see how beneficial and lifechanging the fundraising has actually been for Fionn.
We have been told time and time again so many negative things from doctors and medical professionals, such as “He won’t see 2,” “Take him home and enjoy him while you have him,” “He’s blind since birth.” These types of words are crushing and devastating beyond belief. Well, we just could never give up on Fionn or accept those words, We Chose To Fight For Our Precious Little Boy. Yes, he still has bad days/weeks but the good now FAR outweighs the bad. We went through almost 3 years of continuous and relentless screaming. This journey is beyond cruel and heart-breaking at times but boy are we grateful to have Fionn and blessed to learn from him daily. We are also so grateful to have the best possible support from everyone who helps with fundraisers for him. Thank you all. We literally couldn’t do this without you. We are also blessed to have some wonderful nurses helping us to care for Fionn through a HSE homecare package several nights a week. We also have had Jack and Jill nursing hours which we will now lose once Fionn turns 5. Our nurses are like family to us. It costs €160 to have a nurse care for Fionn overnight.
THERAPIES
Fionn receives neuro-developmental physio four days a week, and fundraising money helps us to cover this cost. Before we started this type of physio Fionn suffered excruciating muscle spasms daily; now he very seldom gets them. He is also eating by the mouth due to the improvement in his head and neck muscles, and we had been told he’d never again eat by the mouth.
This boy is defying the odds daily, and it’s thanks to everyone who has helped and supported his fundraising campaign. He makes us so proud every day.
Physio is a constant and continuous requirement that is not cheap but the results of which are invaluable to Fionn and his quality of life. Thanks to the space provided by our accessible extension we now have a dedicated physio room at home and he can follow his neuro-developmental physio programme with the help and support of his friend and therapist Danny. This enables us to keep the amount of sessions up at a level that will be beneficial for Fionn. Fionn’s home programme and progress is monitored closely by the team at First Step.
Deepest thanks to everyone again.
Fionn is working so hard on a daily basis, his core is improving so much and we are able to feel a huge difference in the stability in his body when he’s up on our laps and he’s almost strong enough to sit independently. It’s a long road but please God he will sit at some point in the future. Thanks to the private physio this is now a realistic goal for Fionn.
Fionn also sees a private occupational therapist and he is doing so well and has genuine potential to progress in this area also. We are so excited to start working on other things than just physio all the time and so incredibly thankful that we are getting great days where Fionn can concentrate on playing and holding things. With the occupational therapist’s guidance, we have purchased some amazing new switch-adapted toys and we are so excited to see his beautiful face react to them the way only Fionn can. His face, eyes and eyebrows can tell us so many emotions and feelings. We are working with a lovely private occupational therapist who believes in Fionn so much, that means everything to us. We simply couldn’t do anything like that before we started his private therapy because he was screaming with muscle spasms all the time, these muscle spasms were so severe they were initially thought to be seizures. We have managed to almost completely take that pain away from Fionn, with the amazing support from everyone through the fundraising campaign. Due to budget constraints and cutbacks occupational therapy like this is not available to Fionn for free, the occupational therapy is limited to support with selecting appropriate seating.
EQUIPMENT
We also use Fionn’s fundraising money to help us to purchase necessary equipment for Fionn. Sadly in Ireland there are huge waiting lists for all medical equipment for children like Fionn. Currently in county Cork the average waiting time for wheelchairs is approximately 12 to 18 months, in Limerick it is even longer.
Fionn has not had a correctly fitting piece of seating equipment in over a year and sadly this has led to a small curve starting at the top of his spine. I have been assured that we can prevent this worsening by providing the appropriate seating and ensuring Fionn has a postural management plan in place.
Fionn is on the waiting list for his wheelchair but due to the lack of funding, waiting lists and the damage already starting to occur to Fionn’s back and spine we feel we cannot possibly wait another 6 to 12 months for it. We are currently in the process of ordering him his wheelchair privately at a cost of €5,800. Fionn currently goes for walks in a regular buggy which is no longer appropriate or indeed supportive enough for him. He is extremely thrown down in this buggy and cannot see or interact with people very well for that reason. In his new wheelchair Fionn will be able to sit upright and take in a lot more of what is going on and it will also recline should he get tired and want to nap. This wheelchair can also be used on the bus when Fionn is going to school as it can be securely tied down for transportation.
We have already ordered a comfortable chair for relaxing in the home called a ‘ppod’ from a specialist company in the UK which comes in at around €3,000. This has been purchased with the help of our fundraising money, this should arrive this week we hope. (Please see Fionn’s Facebook or Instagram for more pictures and updates)
Fionn will continue to need many items of equipment and ongoing therapies for the rest of his life. After his wheelchair we will need a ceiling track hoist to help with lifting Fionn. He is a growing boy and it is a lot of pressure on him and us lifting and moving him from his chair to the bed etc. Because Fionn’s dad Trevor is working, unfortunately that means we do not qualify for the grant towards a hoist, this hoist will cost around €8,000/9,000. These are items that in an ideal world would be funded for Fionn. We are doing our best to care for and mind our precious Fionn in our home thus keeping him out of the hospitals or residential care, saving the government billions of euros each year. It would just be fantastic if the vital equipment to care for him safely was provided for families like us, even when the husband is in employment as is our case. There are approximately 355,000 carers in Ireland, providing an average of 45 hours of care per week and saving the state approximately 10 billion euro every year, Fionn requires 24 hour care 7 days a week. It is hard, hard work.
Every piece of equipment designed for complex medical needs for children costs thousands and thousands of euros, these pieces of equipment are absolutely necessary and vital in the battle to protect the child’s spine and improve their quality of life but the sad reality is that the waiting lists for referrals, measurements and eventually funding takes years.
These waiting lists and cutbacks are not the fault of the staff on the ground, it goes much higher up, which is sad because I see the therapists so frustrated and despondant as they desperately want to help the children/families but they simply cannot and they just feel so helpless as their hands are tied. These therapists are governed and restricted in the amount of work they can do with each child by stringent budgets and box ticking, and with serious cutbacks and an ever-increasing workload it’s beyond impossible for them to help in the way they wish they could. We are blessed as a family to have such amazing support locally and we have built up a wonderful relationship with his early intervention team in Charleville, who treat us with great compassion and empathy. This is just invaluable to families like us, we are fighting and advocating day in and day out and even though they cannot wave a magic wand and give us the therapy and equipment he needs the way they speak to us and treat Fionn goes such a long way.
As I was recently nominated and subsequently made Carer of the Year by Family Carers Ireland I am honoured to be playing my part in raising awareness of the difficulties all carers face on a daily basis and to share my insight into providing full time care for a loved one, while having the opportunity to advocate for all carers in Ireland.
Being a carer to a child with complex medical needs is beyond difficult and made even more so by the lack of supports in place for us by the government and the enormous struggle to get resources.
Every donation no matter how small will help this precious boy and as you all know his therapies are ongoing; as well as the few big pieces of equipment we are hoping to purchase when we have raised enough money.
FIONN’S ILLNESS
Unfortunately, Fionn has been diagnosed with a very rare genetic mutation called NACC1, this is something called a de-novo mutation which means it is not something that came from Trevor or myself, it is simply one little thing that happened to go wrong. It is not something we could have prevented or anything to do with me having lupus, simply a cruel roll of the dice. This condition is extremely rare and no other cases have been reported in Ireland or the UK. Fionn as yet cannot sit up or walk or talk. YET. In essence he is a beautiful 5 year old boy that is at the developmental age of 6/8 months old. The worst and most devastating effect on Fionn is the unmerciful cerebral agitation, this is when he can cry and scream for long periods often up to 9 days with no sleep during these periods. Fionn can also get a lot of oral secretions which can lead on to awful dusky episodes where he can choke and go blue, we need to use oxygen and suction during this time. He gets all his medicine via a tube into his tummy as he cannot have liquids by the mouth. This is another goal that is achievable with continuous physio as his neck muscles get stronger.
Words cannot express the soul destroying feeling we have when Fionn is suffering his awful agitation cycles. This is a whole other level of hard. But we are strong and he is stronger. Our love for him is getting us through it.
Even though this journey is beyond crazy and at times it is so heart-breaking to watch Fionn suffer, we are also so blessed to have him, and all the support we receive in his fundraising campaign. Please note that our ultimate goal is to keep him as comfortable and happy for as long as we are blessed with him in our lives. Every penny goes to Fionn and will positively impact his life in some way, shape or form.
Always looking for the positive side of things. If you have reached out to our little family and helped us in any way, we are so grateful.
Strength. Courage. Determination. This is Fionn. Please join us in our fight for Fionn.