My gorgeous identical twin boys couldn’t wait to arrive and were born 10 weeks early weighing just 3.1lb. Sadly, whilst in NICU the cranial head scan showed that Caiden had suffered a bleed on the brain & Reece showing a flare. On discharge from hospital 6 weeks after their arrival we was given the devastating news that the boys had Periventricular Leukomalacia which is damage to the white Brain matter around the fluid filled ventricles. PVL can cause damage to the nerve pathways that control motor movements, resulting in muscles that are tight, spastic or resistant to movement. Unfortunately, this is true for my both my boys. 

At one year of age, they was both diagnosed with Cerebral Palsy and have been graded 4/5 meaning that they may never walk and if they do will almost certainly need some equipment assistance to do so. Our beautiful sons are now five years old, so a little about the boys individually.

Caiden melts everyone’s heart and is such a gentle, happy boy. He gives the best cuddles, beautiful smile and has the most infectious laugh. Caiden currently is nonverbal, unable to sit unaided, crawl or walk. Caiden still struggles with his head control due to a weak truck and core muscles which very hard work for him. If Caiden is not in specialised seating he can only lay on the floor and roll onto is side. Due to dystonia Caiden cannot control his arms movements well so is unable to hold his own drink or feed himself (unless it’s his favourite wotsits of course 🙂).

Reece melts everyone’s’ hearts but for completely different reasons. He is the cheeky monkey that has so much determination, he doesn’t want anything to get in his way. He has come on so much in the last year with regards to speech. He can sing most of his favourite nursery rhymes, count to 10 and sing the alphabet. Unfortunately, he currently cannot communicate with us or tell me what he wants but to hear his little voice is a dream come true. Reece has mastered sitting unaided and can crawl so no stopping him getting around the room however he is still unable to stand unaided or walk.

The boys have achieved what they have so far by having regular private physio. These sessions are building their muscles, core strength and teaching them to sit, crawl, stand and walk with the fantastic equipment available. Physio is such a huge part of every day for them but they take it all in their stride like the true warriors they are. Due to the generous donations so far we were able to take them to SwimLab international for a 5 day intensive physio week. It was magical to watch them working hard but enjoying it at the same time and we are working hard to make sure this can be an annual thing.

The continued physio will help the boys develop and improve cognitive, physical and motor functions so they can enjoy more freedom and independence. We just want to give the boys every opportunity to become the best they can be.

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2026 - WE ARE MOVING

Unfortunately following an OT home assessment it was confirmed as we expected that our current home cannot be adapted to make it suitable for both boys. We need to move to a bungalow and unfortunately this isn't something we can afford. My husband works full time however I can only work part time due to the care of the boys, appointments and school holidays etc.

So, we are moving into my parent's bungalow and they are moving into the annexe, we are so lucky that this was an option.

Even though it is a bungalow, the bathroom and kitchen are down six steps, meaning that we need to install a flexistep at a cost of £21,900. Along with this there are many other adaptations required from access to the bungalow, widening the front door and ramp, installing a wet room and creating new doorway, Widening doorway from lounge to dining room, widening two bedroom doorways, lowering ceiling for hoists, widening back door for access to the garden and storage solutions for the boys equipment.

Once we have moved we can apply for a grant to help with some of the cost however have been advised that the wait for an assessment is approx six months and then a further six months for grants etc. The main works above cannot wait a year. As the boys are growing it is becoming extremely difficult to lift and carry them around safely and to wash and bath them.

We will be carrying out as much of the works we can with the sale of our property however there is so much to be done. It is very difficult for me to ask for help but if there is anything you can donate it would be so appreciated and we would be forever grateful.

With your help we can ensure the boys can continue the vital physio to help them become the best they can be and give them a safe home environment.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, they will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child, any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.