This Mother Will Run the London Marathon for Rare Disease Awareness

As reported in the Northhampton Chronicle;, sometimes it’s our toughest challenges that inspire us to grow taller than we thought possible and to push past our notions of our limits.
Northampton’s Elizabeth ‘Libby’ Harvey had never considered running her forte. As the caregiver of 13-year-old Alexanda at age 41, Libby saw her personal milestones cap out around a few miles.
However, her preteen’s lengthy list of challenging health conditions has served as a lifetime reminder of the great value of strength and perseverance in the face of adversity. Alexanda has struggled with an array of rare illnesses, including interstitial lung disease, phenylketonuria (PKU), surfactant protein deficiency C, and epilepsy.
As she nears a decade and half as a full-time mother caring for a child with the most trying of medical needs, she decided to tackle the hardest of physical challenges too— the London Marathon. Libby’s personal challenge this October will be motivated by her son and the chronic illness community.
Her run will specifically be raising awareness for efforts to create a hospice in neighboring Northamptonshire, to provide some vacation time for caregivers. Libby was in part inspired by the great relief her and her son have benefited from since receiving care from the Helen & Douglas Hospice in Oxfordshire, rejoicing the quality time that is free from the shadow of medical responsibilities.
Libby said,
“Just having a two-day proper break from the medical responsibilities is a huge weight off my shoulders and they are superb with Alexanda.”

Phenylketonuria (PKU)

Phenylketonuria (PKU) is a rare genetic condition that causes patients to have too much of an amino acid known as phenylalanine. This build up can cause serious, irreversible health issues including seizures, developmental and intellectual delays, hyperactivity, decreased bone strength, a shrunken head, skin rashes, musty odor to breath and skin, and heart defects. Early detection can prevent the irreversible intellectual damage and other effects by closely monitoring the amount of the amino acid in the patient’s blood and adhering to a strict diet that limits protein.

With Hospice Comes Joy

For the Harvey family, getting the respite of hospice care is a lifeline. When you’re a caregiver for a loved one with complex medical needs, the depth of knowledge and habits needed to keep up with daily maintenance is hard to pass off to someone without experience. An unwell body can be unforgiving to any disruptions to the routine and insensitive to the convenience of it’s flare-ups.
Having the Helen & Douglas Hospite center in Oxfordshire has meant some respite from the typical round the clock routine. The rare taste of vacation time from health care needs makes getting rest a little more joyful.
 “Since being referred to the Helen & Douglas Hospice, the difference it has made to our family is massive. There is someone to talk to 24 hours a day when I am worried about anything.” – Libby
Still, Libby knows that the needs of rare patients are seldom met without persistence and she notes that even those in neighboring counties don’t have access to these resources.
She said,
“When we are there I get to just be ‘Mummy’ and ‘Libby’ rather than constantly being on high alert. It really surprises me that there isn’t a similar residential facility in Northamptonshire.”

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