Margo was born at 37 weeks via emergency c section. Despite severe hypermesis gravardium and a few hospital visits for reduced movement, no concerns were raised during my pregnancy.

When Margo was born, she didn’t cry and only made small whimpering sounds. A paediatric doctor was called but we were advised there were no concerns and we were sent home the same day.

Margo struggled with feeding and despite constant breast milk and bottles, she continued to lose weight. We were referred to the paediatrician at the hospital, who told us Margo had “failure to thrive” and appears “floppy” for a child her age.

She also told us that Margo had a single palmer crease on one of her hands but was otherwise seemingly healthy.

I had never heard of having only one line on your hand and despite my better judgment, I decided to consult “Doctor Google”. A syndrome called “5P Minus”, also known as “Cri Du Chat” was a possible cause. This was a result of damage or a permanent deletion to the 5th chromosome. The symptoms and characteristics of this is on a spectrum and vary from person to person.

As I read the characteristics my heart sank …

• Cat like / weak cry

• Failure to thrive

• Epicanthal folds on the eyes

• Developmental delay

The list went on ….

I called the hospital, asking to be seen by the doctor we had seen previously. When we were asked to go back to the hospital, we were told Margo displayed “some of the characteristics, but was not a typical child with the syndrome” and that they didn’t think she had it. But as we had raised concerns, they would send off her blood for genetic testing.

After what felt like the longest three weeks of our lives, Margo was diagnosed with Cri Du Chat syndrome, failure to thrive and hypertonia (low muscle tone).

We were referred to physiotherapy, speech and language therapy, occupational therapy and the dietician.

As Margo continued to grow, it was clear she wasn’t meeting her milestones the way our other children had.

She is still small for her age, and although doing amazingly, she has developmental delay. She is almost 18 months old and cannot sit independently, crawl or walk.

Despite all of this, Margo is the most perfect, beautiful, happy, smiley little girl who means the world to us.

Why we are fundraising …

Margo has attended NHS physiotherapy since around six months old. Unfortunately, they are only one hour a week sessions for six weeks blocks, 4 times a year. This is only around 24 hours a year. Because of this, we would love to be able to take Margo to private physiotherapy , hydrotherapy, osteopath sessions and any other therapies that would be a benefit to her to help her physical and cognitive development.

We know how important early intervention is for children with Cri Du Chat syndrome and we want to give Margo the best chance of reaching her full potential. However, the cost of all these therapies to help her is unfortunately just not something we can afford.

Our dream is for her is to be able to run around and play with her brothers, and live the most independent life possible.

A private physio session ranges in price from £80-£95 an hour. Along with hydrotherapy, osteopaths, private speech and language therapy as well as the sensory and learning equipment, it all totals unimaginable costs.

Our goal of £25k is to enable access to therapies for Margo to help her learn to walk, talk and achieve her full potential.

We would appreciate any support you are able to offer. By donating, you are helping us to give Margo the most amazing opportunities.

Thank you so much.

Love,

Kyle (Dad), Emma (Mum), Louie & Noah (Brothers) and of course our beautiful Margo xxxxxx

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.