Finding Tess

Meet Tess, our sweet girl. Her birthname is Esther and we also call her Queen Esther, in reference to her courage, tenacity and attitude, and due to the fact she is a little high maintenance!

Tess was born in August 2018, a younger sister to her brother Teddy, and we look back on those first few weeks as some of the happiest of our lives.

But at around 8 weeks old, a change came over Tess. She became pale and withdrawn, stopped making eye contact and interacting with us (no more smiling and vocalising), and started sleeping for long stretches. She also began projectile vomiting after feeds and losing weight. Reflux was suspected and treated, but I felt deep-down that something else was wrong.

In early November 2018, we one day noticed her arms and legs stiffening repeatedly on her changing table. With a sickening feeling, we knew this was some type of seizure, but hoped it was a one-off.

We showed a video of the movements when we arrived in A&E, which kickstarted 48 hours of extensive testing. We pretty much toured every floor of the hospital as Tess was examined, bloods and urine taken, x-rayed, CT scan, MRI, lumbar puncture, ultrasounds, more bloods…and everything came back normal. Until we were to be given the result of her EEG (a test that looks for abnormalities in your brain waves by monitoring the electrical activity of your brain) and her neurologist came late that evening on the second day to discuss the results in person.

“Your daughter has a very serious brain disorder.”

Words that in an instant change everything. Words you cannot forget. Tess’ EEG had shown a chaotic brain pattern called hypsarrhythmia associated with a type of epilepsy called Infantile Spasms, which is known to be catastrophic given its ability to derail and regress development.

Treatment began immediately but Tess’ epilepsy has proven stubbornly resistant to medication and other usual treatments, including the ketogenic diet. We were despairing as our hopes were dashed time and time again.

Being unable to find relief from conventional medicine, we had to look outside for private and alternative treatments and it was there that we began to find hope that we could find things to help our girl. The more and more we learnt, we found out that the brain can heal!

We now feel like we are finally on the right path. By gaining a private prescription for medicinal cannabis and by incorporating other holistic therapies (particularly work to heal her gut, neuroplasticity therapies to stimulate learning, and respiratory therapies, including hyperbaric oxygen therapy), we have seen pick-ups in development, a reduction in pain, and the all-important move towards quality of life.

Over this period, Tess has come from being functionally blind to being able to track lights, she recently learnt to sit unaided for periods of time, she is starting to use her hands to explore, can bear her weight on her legs and is slowing developing a stepping motion.

We have called this page ‘Finding Tess’ because there have been times when we felt she is lost behind the cloud of her condition. However, increasingly there are now times when the cloud lifts and her personality starts to shine through. When she smiles, it feels like the sun has come out on our lives.

We want to give Tess every opportunity to continue to develop and to experience a life filled with joy. 

Immediate goals are for Tess to further develop using her hands, especially to learn to self-feed, to keep integrating her vision with movement, to work on her standing balance and taking steps, and to see continued improvements in her sleep as we work on her gut health and calming neuroinflammation.

The level of care Tess needs has prevented me (mum Cathy) from working full time so I can be at home with her. This has led to our family being under considerable financial strain due to the level of expenditure required to fund the therapies, medicines, supplements and specialist equipment that she needs (as an example, a special needs car seat costs in the region of £2,500 and is not funded by the NHS).

Funding menu:

Ca. £40 could buy one of Tess’ nutritional supplements (functional medicine approach to heal her gut and reduce inflammation)

Ca. £100 could buy an hour’s specialist neuroplasticity / physio therapy 

Ca. £150 could buy a bottle of medicinal CBD oil on private prescription

Ca. £500 could buy a rezzimax tuner, a handheld device that uses vibration to fine-tune your nervous system

Ca. £700 could pay for a month's rental of a home hyperbaric oxygen chamber

Ca. £1,000 could pay for a week's physiotherapy and occupational therapy intensive

Ca. £7,000 could pay for a week's therapy intensive at a US centre for neurorehabilitation

Thank you so much for taking the time to visit our fundraising page. The above funding menu is just to give a flavour for Tess’ ongoing expenses - we would be so grateful for any donation, no matter how small, as any contribution will make a difference to her life.

Please visit Tess’ Instagram account at https://www.instagram.com/finding_tess_/
for regular updates on her (and our!) healing journey.

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 objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.