We’re seeking to raise £25,000 for Naomi House (& Jack’s Place) Children’s Hospices near Winchester, in loving memory of our beautiful daughter Lara who passed away peacefully in our arms on Aug 22nd 2024. Lara had 10 days at Naomi House during the end of her life, where we all were looked after with the greatest care, dignity and respect. We are so grateful for this time we had together as well as the years throughout Lara’s life when we were all able to receive support from the charity, most significantly in the form of respite provision.

A little about our beautiful and unique family....

On 7th October, 2011, Lucinda & I had our first child, Lara. We had waited until we were financially stable and we had longed for a family. I cannot describe the elation we both felt at her birth but we quickly realised all was not well. We had concerns over her general development and health and within five weeks we found ourselves at Southampton’s children’s Hospital. After Lara’s initial examination we were told she was blind and then followed a cascade of diagnoses. One afternoon, when I was changing Lara she had bad reflux. To ensure she didn’t choke I turned her over in my hands and it was then I saw her spine was badly deformed. A paediatric consultant described it as “very, very bad.” From this point on we were in the nightmare that is unexpectedly having a severely disabled child with a life-limiting condition. We were devastated. All of the normal dreams that a parent has were suddenly obliterated. Not being called Mummy or Daddy. Not walking hand in hand, blowing out birthday candles, or seeing your child jumping in puddles. Even getting a smile was difficult on many occasions. Walking my daughter down the aisle is something I’ll never do.

It turned out that Lara had a condition called WWOX deletion or WOREE syndrome, although we didn't find that out until after Maddie was born (on 28th November 2016).

WOREE is a brain based degenerative condition that impacts everything. Lara had cortical visual impairment so at best could see shadows & couldn't think for herself in any tangible way. She couldn't eat or use her limbs or even move for herself. She was doubly incontinent so we learnt to catheterise her intermittently, and we fought to feed her a blended diet of home cooked food, through her feeding tube, once we realised the negatives related to milk-only diets. She had infantile spasms which were horrendous to watch, and epilepsy. The latter was generally controlled by the time she was 3-4, but tended to flare up when Lara had an infection; and in her infancy, this, with constant respiratory infections, caused numerous hospitalisations. Lara had life-saving spinal surgery at age 2 to reverse a 90-degree scoliosis and kyphosis. Two titanium rods were screwed to the length of her spine to stop her organs being crushed.

Being a new parent is tough enough – but we were out of our depth from the outset.

It took us four years to decide we could cope with having a further child. Despite all of the tests run by specialists which were available at that time, Lara’s condition wasn't successfully identified, and so she was given the “SWAN” label (Syndrome without a name). We also received genetic counselling, which left us being told that there was less than a one per cent chance of having a second disabled child.

We then had Maddie, our second beautiful child. The excitement we had felt at allowing ourselves to believe we were about to have our first healthy child was yet again shattered within the first week of her little life. It was very apparent that Maddie had the same condition as Lara and when she had her first seizure at just 3 weeks of age it was confirmed. As you can imagine, this sent us reeling for a second time. We went through all of the same agony again.

Genetic examination of each of our DNA then occurred at Exeter University where they identified the above condition. We were then informed that there was a 25 per cent chance of any of our children having the same condition.

Lara was the most beautiful of little ladies (as was Maddie). When Lara smiled it lit up the room, when she sat on my and Lucinda’s laps she gave out the most lovely sigh of relief - like she belonged - and when she heard the song “do you want to build a snowman?” her eyes lit up and shot upwards. We’ll always miss Lara and Maddie. Two big pieces of us are gone and will only be made complete when we meet our Creator and re-unite with our girls.

In October of 2021, Maddie was hospitalised with the Rhino Virus (AKA the “common cold”). Maddie had to be intubated. She had a particularly floppy airway, and we were told to expect extubation to be unsuccessful and to consider what was in her best interests should re-intubation be necessary. It was necessary, and life support was withdrawn from our precious Maddie days later.

Through Maddie’s passing, two unknown ladies were able to benefit from Maddie’s kidneys, and her liver.

We then lived with having lost one child we adored and knowing we would lose another we adored.

On 17th June, 2024, Lara went into hospital for her final time, again with a chest infection caused by Rhino Virus. After 8 weeks of significant de-saturations and crashes, the decision was made, putting Lara first, to go to Naomi House Children’s Hospice, for palliative care.

We will never be able to properly thank or repay the staff within the Children’s hospital, with their amazing nurses and consultants, physios and even play specialists, for their care for and love of, both Lara and Maddie.

The same is true of staff at Naomi House.

In addition to all of the struggles presented above, there were other struggles which parents of disabled children shouldn’t but often do have to go through:

Physically taking both children to an independent tribunal to win the right for Maddie to go to school on the bus that was already taking Lara to the same school.

Disability adaptions requested of the council shortly after Maddie was born to allow both girls to sleep in the same room upstairs (the only viable room) were delayed, and only completed around 10 days before Maddie passed away.

Wheelchairs, which are crucial not just to allow a person to sit in but also to aid recovery from respiratory conditions and postural support for complex spines, were often delivered months after they realistically should have been, even when taking austerity into account.

Getting the lift which had been installed just a few weeks before Maddie’s death (and was a constant reminder of what had happened) removed, took 10 months of chasing to get it gone.

Where both Lucinda and I work in busy public service jobs, and care was needed for the girls, we often were begging the ICB (formerly Care Commissioners) for the right people to provide the right number of hours to have some sanity in our lives.

Working and looking after a disabled child is relentless. With all of the emotional and physical struggles (of which the above snapshot is but a few) it can often feel like you just can’t keep your head above water. Respite gives parents a break from the mental and emotional exhaustion of looking after a disabled child (or two). An opportunity to re charge the batteries and regain the strength to pick the baton back up after the short break. Due to the complexity of our daughters' condition, Naomi House was the only facility available to us which could provide the right level of care. When Lara was first taken on by the charity (and later, Maddie) they were in a position to be able to offer 19 nights of respite per family. This allowed us to stay as a family at their fantastic facility and just be parents whilst others took care of the nursing needs. It also enabled us to take some breaks away as a couple, and later as a family after the birth of our son (through genetic selection IVF which screened against the condition). Sadly, in recent years, this respite provision has been eroded to just 10 nights per year for cost reasons. This had a significant negative impact on our family and I am sure the same would be said of other families.

So, we’re seeking to raise £25,000 because we believe this is easily achievable, and we know the difference that respite can make to allow parents to reset temporarily. Having been there for ten days in August (a key holiday month) we know Naomi House had considerably more capacity than was being used, and that will be down to lack of funds, not lack of need.

We’d be very grateful if you’d consider giving to this great charity to help families in situations similar to the one described above.

Thank you.

Jonny & Lucinda