“Our daughter Scarlett was born premature at 31 weeks gestation alongside her twin sister Beatrix. During my pregnancy I developed Twin to Twin transfusion syndrome. This is a very rare condition which can occur when twins share the same placenta, and in my case Scarlett had an absent placental flow of oxygen and nutrients, as these were being donated to Beatrix. Placenta surgery was required to save both twins which was performed at a specialist centre in Birmingham. The surgery was very complex and there was very high risk of losing one or both twins during the procedure or in the weeks following surgery.

Against all odds both of our girls survived the laser ablation surgery, however it was in the weeks following we found out that, due to the oxygen depletion, Scarlett had extensive damage to her kidneys, bowel and brain. At around 24 weeks Scarlett was placed on a palliative care pathway, and we were informed that if she survived the rest of the pregnancy, then she would pass away soon after her birth. Miraculously Scarlett’s kidneys started to function at around the 30 week scan and she was born with an active treatment plan at 31 weeks. Scarlett has had two bowel operations since birth. She has also developed the neurological conditions Porencephaly and Periventricular Leukomalacia.

Although we have not received a formal diagnosis of cerebral palsy from the NHS it has been noted by therapists that Scarlett has strong characteristics of cerebral palsy as she continues to have her primitive reflexes and has right sided weakness in limbs referred to as diplegia. Scarlett is 12 months of age, but 10 months corrected. She is severely delayed within her gross motor skills and is only recently learning to roll herself over, which she finds difficult as she struggles to remember to move her right arm and leg. When she left Alder Hey hospital following her bowel surgeries in December she had very little movement within her right limbs but gradually through home physiotherapy and hydrotherapy this has improved. Scarlett is unable to sit independently and requires specialist equipment such as a corner seat in which to sit. It is only recently when we commenced at the Rainbow hub where we receive conductive education, it was suggested about using a Galileo machine. Scarlett struggles with over extension of her muscles within her legs which means that she slumps within a sit position, whilst her lower abdomen has very little tone and she struggles to lift her stomach without assistance off the floor into a crawl position or go on all fours. The Galileo works equally on low and high toned areas, to improve flexibility and the spasticity that she encounters daily.

We are wishing to fundraise for a Gaileo Vibration Plate, which costs 4799 pounds. Galileo training is something widely utilized within the health systems in America and Germany for neurological conditions with positive results but sadly, in the United Kingdom is only available in a select few private clinics. Presently we have attended a clinic in New Brighton, Liverpool for a couple of sessions which is around nearly 4 hours round trip and around 100 pounds each time (80 pounds per a session, 3.60 toll and the remaining in petrol money from Blackpool). We felt it necessary to access the nearest clinic, as we wished to ascertain prior to fundraising that it would be beneficial in view of the expense. From the sessions Scarlett has undertaken once a week, the benefits to her have been remarkable. It allows her to have looser leg muscles, and she came away after the first session cycling her legs, rolling more freely, and appeared to not be in any discomfort or pain with stiffness which she sometimes gets. As a mother I cannot even begin to tell you how amazing it was to see Scarlett not as restricted within her own movement and body. I believe this is just a snapshot of how this could benefit Scarlett, as the recommendations in Germany where the machinery is produced advise that the equipment should be utilised daily within physiotherapy exercises for maximum benefit. I have spoken to others who have children with neurological conditions like Scarletts and they have also seen great benefit from daily sessions.

The Galileo device works by emitting high frequency vibrations through a plate. It is a very safe treatment as it is based around a natural human walking gait, providing a tilting and rocking motion which causes the body to have rhythmic muscle contractions in left and right side of the body. These are reflex contractions and not conscious movements. In Scarlett’s case I have noticed at the sessions this has allowed her right side to receive equal movements to her left during the sessions, allowing her muscles to improve flexibility and range of movement. I have noticed a huge change in the evening, where previously Scarlett would flop to her weak right side, she is now able to have an improved level of balance and I am delighted to see her manage a few seconds independent sitting which is truly amazing.

Due to Covid 19 and lockdown, the support from our NHS services has been extremely limited and mainly carried out via telephone rather than face to face. We contunue to sustain significant expense to seek private face to face consultations. In my area, there are no hydrotherapy services on offer for pre-school children so I have meticulously saved to ensure that Scarlett receives this privately to help to improve her muscle tone. This is because she had no therapy during the 1st lockdown, which led to very tense muscles which she was in a lot of discomfort with. I therefore really wish to keep hydrotherapy going, but if I was to try and save for a Galileo this would have to be cut causing a lot of discomfort to Scarlett.

The Galileo would be amazingly beneficial alongside hydrotherapy, as it could help to enhance her quality of life, as she would be able to tone her muscles and increase her balance within different postures. This would enable her progres with gross motor skills to hopefully learn to crawl and even walk! Presently she is not making much progress with her sitting, as she continues to be imbalanced due to her unequal levels of muscle tone within her body. It would be lovely to see her be able to have increased independence to be able to sit and look at things and play with her sister without my support behind her, as her corner seat she is only able to go in for two 30 minutes segments a day.

I have received so much feedback within therapy sessions, who state that Scarlett shows great promise as she is very determined and has an awareness of her movements, together with her fighting spirit I wish to provide every opportunity I can to enable her to have a pain free, mobility and be able to play with other childrens. I am concerned long term that if she does not receive Galileo therapy that she will not progress to sit and fall further behind within her milestones and struggle to interact with her twin and other children’s within play due to this delay. I would be so grateful of any support people could provide and sponsorship for the toddle walk.

I have never applied for funding before, so please do not hesitate to contact me if you require further information. Prior to having my twins I worked full time within the NHS but due to Scarlett’s many co-morbidities and multiple appointments, as well as the significant cost for childcare, I have made to difficult decision to go part time. Whilst it is a financial struggle, I manage to fund her hydrotherapy, and transport to appointments. She has to spend time away from her twin sister to attend her Galileo treament, but sadly I am unfortunately unable to afford this piece of equipment. I am extremely grateful to Lynn for this fabulous idea, and thank anyone for any assistance they can manage to improve the life of my little miracle Scarlett.”