Supporting Lyra’s Journey

Lyra is our beautiful six month old baby who unfortunately has already been through more than many adults go through in a lifetime. By just three months Lyra had been diagnosed with infantile spasms, epilepsy, hypotonia, and a rare gene change on the CLTC gene. Only two other people have been documented with Lyra’s exact gene change and very few people in the world have other changes on the CLTC gene. Our neurologist advised us that we cannot predict Lyra’s future but that she is likely to have lifelong disabilities. We are determined to give Lyra the best start in life and we hope that by sharing her story you may wish to support Lyra on her journey.

Lyra was diagnosed with seizures at just 3 months old after being admitted to hospital with clusters of increasingly severe seizures. Following emergency investigations and treatment, she was later diagnosed with infantile spasms after an EEG at Great Ormond Street Hospital. Infantile spasms are the most catastrophic seizure type in babies and can significantly impact brain development and may lead to lifelong neurological and physical disabilities. Since the onset of her seizures and spasms, Lyra has experienced developmental regression. She lost previously developed interaction skills, including smiling, eye contact, tracking objects, and playful movement. Due to her gene change and the impact of her seizures Lyra is currently delayed in reaching physical milestones appropriate for her age.

Lyra is currently working hard at weekly private physio with Mini Wonders and our current goal is for Lyra to lift her head independently. She’s already getting stronger and making gains that we are so proud of! Early intervention is crucial for Lyra’s development and physiotherapy will play a vital role in helping Lyra build strength, improve movement and head control, and support her overall development. Alongside physio we are hoping to buy specialised and adaptive equipment to support Lyra to sit, bathe, wean etc and we anticipate more equipment and additional therapy (for example occupational and conductive therapy) as well as home adaptations will be needed as she grows up.

We are determined to give Lyra the best start in life and expose her to every opportunity possible to support her. If you would like to help, any donation, big or small, is greatly appreciated and please feel free to share Lyra’s fundraising page. We’ve made an instagram account to document and celebrate Lyra’s progress, if you’d like to follow along and root for Lyra please follow @lyra_sjourney.

Thank you for taking the time to read Lyra’s journey so far, she is loved beyond words and we will never stop advocating for her and helping her to live a full and beautiful life.

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