Family Pleads for Assistance to Help Daughter Fight Rare Disease

Morgan Van Der Westhuizen was born on 27 December 2017 and, right from the start, had difficulty feeding. While breastfeeding is typically encouraged, it was not advised for little Morgan as it left her lethargic and with a grey complexion. Unfortunately, normal baby formulas caused a similar reaction – feeding every 3 hours with 2 hours of fussing in between, as well as severe reflux.

After months of Morgan suffering from constant infections, multiple misdiagnoses, and her family desperately trying to find a suitable food source, she was diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES).

What is FPIES?

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a very severe condition that causes vomiting and diarrhea. In some cases, it can also progress to dehydration and shock that is triggered by decreased blood pressure and compromised circulation. FPIES affects the gastrointestinal organs and is often referred to as a delayed food allergy. Most children diagnosed with FPIES only display an adverse reaction to one or two food types such as dairy or soy. In Morgan’s case, however, it soon became evident that it would be easier to list what she wasn’t affected by than what did cause a reaction.

A new lease on life

After being diagnosed with FPIES at the age of 9 months, the battle began to find a feeding solution for Morgan. After countless failed attempts, a formula was found that did not trigger an adverse effect in Morgan – Neocate. The gravely ill little girl transformed into a new child. Not only did she gain weight and hardly cried, but she was also happy! Unfortunately, there was a downside to Morgan’s new lease on life – Neocate’s exorbitant price tag. At present, a tin of Neocate (which only lasts a single day) retails for approximately R500. With Morgan’s diet being extremely limited, this equates to the family having to fork out in the region of R15,000 a month on the formula alone.

There is no way around a very limited diet

At present, Morgan can ONLY eat:

Neocate formula (which is the most important as it provides 90% of her nutrition)
Lamb
Avocado
Banana
Essential Amino Acid Mix (Protein Supplement)
Fantomalt (Carbohydrate Supplement)

There is no suitable alternative to the Neocate formula and without it, Morgan will not be able to receive the nutrients needed for survival.

A long road lies ahead

Due to the FPIES Morgan, who turns three in December, is extremely underweight and underdeveloped for her age. Her life consists of occupational therapy and frequent visits to her pediatrician and team of specialists. Unfortunately, these medical expenses are not all covered by medical aid. Due to the malnutrition, Morgan has also developed a primary immune condition which requires a separate treatment plan.

Morgan’s condition has a huge impact on her entire family. When she is admitted to hospital (which is frequent) her mom Jenna stays with her. Morgan also has an older sister Dani who has been forced to be mature for her age and who often has to take a backseat because of Morgan’s needs. Morgan’s dad is the only breadwinner in the family and while he does this with all the love in the world, the financial strain on the family cannot be ignored.

A plight to keep Morgan alive

At present, Morgan’s feeding expenses are as follows:

Protein: Essential Amino Acid Mix 3 tins x R3250 = R 9 750 per month.
Carbohydrates: Fantomalt 4 tins x R 435 = R1 740 per month
Fat: Liquigen 4 bottles x R290 = R 1 160 per month.
Neocate LCP: 23 tins x R 489.95 = R 11 268.85 per month.

In a bid to try and ease this financial burden, the family has started a BackaBuddy campaign. All funds will go directly towards helping feed Morgan. Many children with FPIES outgrow the condition by the age of 5 and the primary goal at present is to keep Morgan healthy and strong so that she may outgrow FPIES and live a long and happy life.

Please donate to Morgan’s BackaBuddy campaign here: